CMTHighlights

2011-11-13T12:18:00.001-08:00

We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way. --Author unknownA millionaire wanted his son to understand that the world was made up of those who had great happiness in the world because they never wanted for anything, and those who lived in unhappiness because their struggles were never-ending. He asked one of his lowest-paid workers if his son could stay for a weekend, and the employee agreed.When the weekend was over, the millionaire picked up his son. On the way home he asked his son, "What did you learn about how others live?""A lot," the boy replied as he sat with his shoulders slumped, "We have a dog, but they have three dogs and a couple of cats. They even have chickens and ducks and a donkey. We have a swimming pool, but they have this great big lake. We have a deck, but they have a back yard that stretches for miles and miles. And at dinner, they all sit around a table and laugh and talk together."The millionaire sat in silence, listening to his son."I guess the lesson I learned, Dad, is how poor we really are."Rather than rue what w do not have, today be happy for all that you have been given.

2011-11-12T12:03:00.001-08:00

If the only tool you have is a hammer, you tend to see every problem as a nail.-- Abraham MaslowWhen we can take a long view of our problems, we can sometimes see that we're using inappropriate tools to try to solve them. What's necessary for us to do is to move away, to detach. That may show us a whole new context into which our problem fits, and in which it may not even be a problem.Detachment is hard to achieve when we're deeply hooked into a situation. When we send ourselves drastic messages like "now or never!" we're pressing our noses right up against the problem - a position in which it's difficult to maintain a balanced view. To stop and say, "If not now, then perhaps some other time," unhooks us and lets us remember that life is richer and more varied than we thought when we were hooked.Crisis thinking can be like a hammer - it flattens everything. This can be our way of trying to control the outcome of our individual struggle. But when we remember that we make up only small parts of one grand and beautiful design. We can surrender our problems to it.I can surrender to the Joe Paterno news, but I do not and will not ever accept unreported child abuse and find this disgusting because all of this was happening while he was supposedly donating to the Charcot Marie Tooth disease association. I always felt that having a sports figure as "spokesperson" was wrong in many ways. CMT is a disease that affects so many people so severely, both women and men, people who cannot participate in sports at all. Too many sports figures are "idolized", then they usually fall from grace. Just thinking about the year O.J. Simpson made the record of touchdowns for USC, then later turned into a murderer and thief. Sure it all blows over eventually, but CMT is not well known and needs a bigger, well known, younger,clean background spokesperson. I tried to introduce Shadoe Stevens to the CMTA and his Public Service Announcements for 2 years on radio have been heard by millions. But until the CMTA can settle down and re-tool, I cannot use my contacts to help. It's onward to The CMTUS Incubation Process for 2012 with a meeting next week! All the tools are right at my fingertips!

2011-11-10T11:03:00.001-08:00

Each day is a new start. Each moment is a beginning.We do not have to wait until Monday to get back on track or clean a closet or tackle a difficult job. We do not have to wait until tomorrow morning, either. Now is the moment to stop, to make a phone call, to begin whatever project we have been putting off.There is no way we can change what we did five minutes ago, nor can we predict what will happen half an hour from now. We can only deal with now.By doing what needs to be done right now, we make the most of each present moment. As long as we are alive, we are always free to begin again. Instead of following old, worn out habits, make a fresh start this moment on the rest of your life. Enter the door of your life.

Gifts

2011-11-08T17:42:00.000-08:00

Roger Miller once said "some people walk in the rain. Others just get wet."Gifts are usually surprises. We don't generally know what the ribbons, bows, and wrapping conceal.Life's greatest misfortunes are, in retrospect, often referred to as gifts. While a debt can feel like a curse, when we finally get to the bottom of what's happened to us, we're surprised to find something good - a gift or blessing of sorts. Through our misfortune, we may have developed some true and lasting relationships, learned we had some admirable qualities we didn't know we had, or discovered the meaning of courage.

I anticipate the wondrous surprise to come.

Think Angels

2011-11-05T16:54:00.000-07:00

I never believed in angels. Now I do. I think of angels as people who do nice things for us without expecting much in return. They give for the love of giving. They seek out opportunities to help, even when it seems inconvenient. They don't always look like we expect them to look or smell like we think they should. Their beliefs aren't always aligned with ours. But when we need them, they are there.One of the first times I really understood their concept was when I drove from

Boston to Los Angeles in 1969. There I was, thrust into a big world I had never known except in geography class. I was terrified but willing to make the drive. This cross-country trip was to become a metaphor for the bigger journey in my life.Angels were everywhere. I met them in gas stations and rest stops, on the highway, in hotels, at restaurants, and at every meeting place I stopped along the way. From Boston to Chicago to Columbus, to Jefferson City and Santa Fe. then at long last L.A. Their support was unfailing. Because of them, I got from one city to another. Because of them, I completed my journey. My job was simply to show up; they did the rest.When was the last time you recognized an angel? Perhaps they let your car pass into the next lane without giving you a dirty look. Perhaps they offered to assist you when you were overloaded with bags. Perhaps they gave you their seat on the subway or the bus. Maybe they gave you a gift they knew you'd like. Perhaps they loaned you some money, bought clothes or toys for your kids when you couldn't, or just lent a helping hand in whatever way they could. Or maybe it was a friend who just stopped in the middle of a busy workday to take your call or meet with you for coffee or lunch. An angel can be someone you know or someone you meet in passing. Angels enhance your life, if even for a moment.

Incubating Soul Food

2011-10-28T11:01:00.000-07:00

It has been said that "religion is for people who think they're going to hell; spirituality is for those that have been there."Whatever the case, individuals who practice religion and spirituality report better physical and mental health than those who do not. To better understand this relationship and how spirituality/religion can be used for coping with significant health issues, University of Missouri researchers are examining what aspects of religion are most beneficial and for what populations. Now, MU health psychology researchers have found that religious and spiritual support improves health outcomes for both men and women who face chronic health conditions. "Our findings reinforce the idea that religion/spirituality may help buffer the negative consequences of chronic health conditions," said Stephanie Reid-Arndt, associate professor of health psychology in the School of Health Professions. "We know that there are many ways of coping with stressful life situations, such as a chronic illness; involvement in religious/spiritual activities can be an effective coping strategy." Religious and spiritual support includes care from congregations, spiritual interventions, such as religious counseling and forgiveness practices, and assistance from pastors and hospital chaplains. The recent publication from the MU Center for Religion and the Professions research group, authored by Reid-Arndt, found that religious support is associated with better mental health outcomes for women and with better physical and mental health for men. "Both genders benefit from social support - the ability to seek help from and rely on others - provided by fellow congregants and involvement in religious organizations," said co-author Brick Johnstone, health psychology professor. "Encouragement to seek out religious and spiritual supports can assist individuals in coping with stress and physical symptoms related to health issues. Health care providers can urge patients to take advantage of these resources, which provide emotional care, financial assistance and opportunities for increased socialization." The study examined the role of gender in using spirituality/religiosity to cope with chronic health conditions and disabilities, including spinal cord injury, brain injury, stroke and cancer. Using measures of religiousness/spirituality, general mental health and general health perception, the researchers found no differences between men and women in terms of self-reported levels of spiritual experiences, religious practices or congregational support. This finding contrasts with other studies that suggest women may be more spiritual or participate in religion more frequently than men. "While women generally are more religious or spiritual than men, we found that both genders may increase their reliance on spiritual and religious resources as they face increased illness or disability," Johnstone said. For women, mental health is associated with daily spiritual experiences, forgiveness and religious/spiritual coping, the study found. This suggests that belief in a loving, supportive and forgiving higher power is related with positive mental coping for women with chronic conditions. For men, religious support - the perception of help, support and comfort from local congregations - was associated with better self-rated health. Johnstone is director of the MU Spirituality and Health Research program. He has completed several studies examining the relationships that exist among religion, spirituality and health, particularly for individuals with different chronic disabling conditions and for those from different faith traditions. Food for thought: Soul Food - Illuminations and Inspirations to come in 2012.

2011-10-22T12:22:00.000-07:00

More about the benefits of Stem Cell Therapy for CMT has been posted. My records have been reviewed, the next step is the Quality of Life questionnaire. I am still baffled by the lack of emotional and spiritual theraputics that goes unadressed, thus I have begun sowing the first seeds for 2012 'blooms'. Thank You Harvey Keital and Maggie Smith!Look for your own. Do not do what someone else could do as well as you. Care for nothing in yourself but what you feel exists nowhere else - and out of yourself create. . .the most irreplaceable of beings.

--Andre GideAs each of us gets in touch with the specific ways to serve, it is tempting to judge the importance of our work by comparing it to someone else's achievements. And when that person or group earns more money, receives more praise and recognition, or influences more people, our efforts may feel diminished in stature.But the truth of the matter is that the spiritual path is not a "numbers game." Ways of serving cannot be compared to one another. In spirit's eyes, each mission is just as important as the next. All assignments are equal.A director of a school for emotionally handicapped children says about her work, "My job is to serve with joy and to let spirit work through me. It is up to God, not me, to determine how many kids I actually reach. Ultimately, the numbers are not important; for if only one soul's life has been changed through this work, it has been worth it."Like this woman, your job is to discover what your purpose is - and then fulfill it. It does not matter how small your contribution may seem. You have a special part to play that no one else can duplicate. In God's eyes, all assignments are equal.: UnsubscrYo

People Who Need People

2011-10-19T11:21:00.000-07:00

Each friend represents a world in us, a world possibly not born until they arrive.--Anais NinWe are surrounded by women and men who are necessary for our development. That's a startling revelation perhaps. We don't even like everybody in our life! How can we need them? But we do. The Creator Spirit clearly understands our purpose and our needs, and ushers into our lives those people who will help us grow and change and contribute. It seems mysterious initially, but when we get accustomed to the idea, we are relieved. Each person will teach us something we need to know about life and about ourselves.Our individual character is constantly

growing, changing, maturing. Our understanding of others and our experiences deepens with each unfolding event. The world is ever changing. By design, not coincidence, we will befriend those people who need us, just as we need them.

Pharnext Pleodrug Update for CMT 1A

2011-10-16T17:32:00.000-07:00

Pharnext CMT 1A Update: Networking for new drugsClaire Ainsworth for Nature Medicine 17, 1166–1168 (2011) doi:10.1038/nm1011-1166Published online 11 October 2011Many of today's most celebrated drugs are designed to hit only one biological target with great precision. But a novel clinical trial aims to turn this idea on its head by using 'network pharmacology' to more effectively tackle a common neurological disorder affecting limb movement. Claire Ainsworth looks into how medicine's proverbial 'magic bullet' might soon give way to a more sophisticated arsenal.At first sight, it seems like a rather perplexing experiment. In several hospitals across France, some 60 patients are taking part in a clinical trial to test a combination of three drugs. The first striking thing about this trial is that the drugs have already been approved for human use. The second is that each drug is being given at doses between 10 and 100 times weaker than those usually prescribed. Finally, and most surprising of all, none of the patients suffer from the conditions for which these drugs were originally developed. They all have Charcot-Marie-Tooth disease type 1A, a currently incurable neurological condition that causes muscle weakness and loss of touch sensation, and this trial is the result of a radically new approach to understanding and treating disease.The approach, called network pharmacology, is very different from the current 'targeted' method of drug discovery. To design targeted medicines, researchers typically identify a single protein they believe causes the disease and then design a small molecule that binds exclusively to this target. Network pharmacologists take a very different tack. Rather than focusing exclusively on single proteins or individual biochemical pathways, they look at the bigger picture and target the myriad networks of interactions between the molecules in our cells.“If we want to increase our range of potential drug targets or increase our chances of having a greater clinical effect, then we need to consider multiple modes of perturbation,” says Andrew Hopkins, who researches medicinal informatics at the University of Dundee, UK.Network pharmacology is only a few years old but has already yielded promising results in preclinical studies, leading to new possibilities for anticancer drugs and antibiotics against multidrug-resistant bacteria. A number of human clinical trials of drugs created using network pharmacology are also underway, such as the Charcot-Marie-Tooth disease trial, which is the brainchild of the biotech company Pharnext, located just outside Paris. The disease affects one in 2,500 people, and current treatment merely manages symptoms with physiotherapy and devices such as leg braces.“It is hard to question the current single-target paradigm, which has probably reached its limits.”Proponents say that drugs developed this way will be more effective, will have fewer side effects, and will be faster and cheaper to develop than conventional treatments because they sometimes incorporate already approved medicines. But it won't be easy: there are large gaps in biological knowledge, and many developers are still heavily geared toward supporting the single-target, reductionist approach. “This is a difficult time for the field, which is under a lot of pressure to rapidly deliver new, safe, efficient and affordable drugs,” says Daniel Cohen, head of Pharnext. “It is hard to question the current single-target paradigm, which has probably reached its limits.The uncomfortable truth is that the single-target–based model of drug discovery simply isn't living up to its promise. Of the few drugs that make it through early clinical trials, 50% fail in the phase 3 to launch stages (Nat. Rev. Drug. Discov. 10, 87, 2011).To make things worse, many of the exquisitely honed magic bullets offered by modern medicine fragment into scattershot, as new research reveals that they act on far more than just the single protein at which they were originally targeted. The successful antileukemia drug Gleevec, for example, physically binds four other proteins in addition to the one intended, a property known as 'promiscuity' or 'polypharmacology'. “There is a big hole sitting in the bottom of the assumptions of conventional [drug] discovery,” says Malcolm Young, chief executive of the UK biotech company e-Therapeutics. When it comes to traditional compounds, “there is no effective drug that only sticks to one protein.”It's complicatedThe complex physiological networks that keep cells running have evolved over billions of years to withstand all manner of disruptions. So even though our state-of-the-art targeted drugs might successfully disable one node in a disease pathway, backup processes can kick in to compensate.Some of the most basic staples of the medicine cabinet serendipitously reveal the power of taking the network approach. Penicillin, discovered by the Scottish chemist Alexander Fleming almost a century ago, can bind about a dozen proteins in a bacterium. The broad action of the drug is important; E. coli can survive even when scientists delete eight of these protein targets (J. Bacteriol. 181, 3981–3993, 1999).To understand more about these complex networks, researchers have turned to systems biology, an approach that studies how the sum of all the interactions between the molecules in a cell creates a greater whole. Over the past decade, new technologies, such as microarrays, whole-genome sequencing and high-throughput proteomics, combined with greater computing power, have allowed the field to flourish and create new disciplines such as network pharmacology. Researchers can now gather vast reams of these data to construct complex diagrams representing how cellular molecules are connected to one another to form a network.Instead of thinking about single, mutated genes or proteins, network pharmacologists talk of damaged or corrupted networks—damage that will need to be tackled on several different fronts to correct. For example, Eric Schadt, director of the Institute for Genomics and Multi-Scale Biology at Mount Sinai School of Medicine in New York, and his colleagues have modeled networks underlying the metabolic traits associated with obesity, diabetes and heart disease. Working in mice, Schadt and researchers in the US and France built a network of genes on the basis of their co-expression in liver and adipose tissue and then cross-referenced it against genetic variations associated with metabolic diseases such as obesity. This allowed them to identify a part of the network whose function was perturbed in these diseases. Intriguingly, many of these genes were associated with immune function, and the team was able to use their network to pinpoint three new genes involved in obesity (Nature 452, 429–435, 2008). Additional work by Schadt and his colleagues in the US and Iceland identified a similar network in humans (Nature 452, 423–428, 2008).Young's team at e-Therapeutics has modeled networks that give cancer cells their ability to evade apoptosis, the suicidal self-destruct mechanism that healthy cells trigger when irretrievably damaged. Using computer modeling, they screened another database detailing interactions between about 15 million compounds and 2.6 million proteins to look for potential drugs that would have either direct or indirect effects on the target proteins.Ultimately, the analysis pointed them to the drug ETS2101. The compound, although previously shown to be safe, failed phase 3 trials for lack of efficacy in treating severe brain injury. Yet it turned out to be a potent killer of cancer cells, including melanoma, breast cancer and colon cancer cells, in the lab, says Young.Network pharmacology could also tackle another challenge of drug development: the fact that many drugs work on only a subset of patients, says David de Graaf, president and chief executive officer of the Cambridge, Massachusetts-based biotech company Selventa. “I think the key to this is understanding interindividual variations of disease-driving mechanisms,” he says. Selventa performs network analysis on individual patients for commercial partners such as pharma companies and research organizations to identify the faulty networks underlying the patients' disease. This allows clinical trial organizers to group patients who share the similar disease-driving mechanisms together, thus ensuring that they are testing a therapy on people with the same underlying molecular condition.Earlier this year, Philip Bourne and his colleagues at the University of California–San Diego used their computational platform to show that the anti-HIV medication nelfinavir exerts anticancer effects by weakly inhibiting a broad range of proteins called kinases (PLoS Comp. Biol. 7, e1002037, 2011). “This is directly in the face of traditional drug discovery,” says Bourne. He and his team have also used network analyses to screen 274 existing drugs and showed that 92 of them, including some anti-HIV drugs, might work against tuberculosis (PLoS Comp. Biol.6, e1000976, 2010)One key advantage of screening for combinations of existing drugs, as Pharnext has been doing since Cohen founded it in 2007, is that such drugs have already been safety-tested and approved, meaning that researchers can skip some of the expensive and time-consuming research and development stages. Pharnext's aim is to target the diseases with the largest unmet clinical needs. Charcot-Marie-Tooth disease type 1A (CMT1A), the most common inherited disease affecting peripheral nerves, seemed an obvious one to tackle. Pharnext's combination treatment for Charcot-Marie-Tooth disease has only been three years in the making, compared with the usual eight required for new compounds. A patent application from the company describes tests on a rat model of CMT1A in which the drug combination resulted in a marked improvement in motor function and muscular strength in the rats. The company has been able to go straight into phase 2 efficacy trials with the mix, currently dubbed PXT3003.PXT3003 is a combination of the generic drugs baclofen, normally used to treat spasticity, naltrexone, usually used to treat opiate and alcohol addiction, and sorbitol, a laxative. The trial began in December 2010, involves 80 participants and results are expected at the end of next year.“CMT1A is a relatively 'mild' disorder. From an ethical point of view, this reduces the risk doctors and patients are willing to take when testing candidate drugs,” says neurogeneticist Klaus-Armin Nave of the Max Planck Institute of Experimental Medicine in Goettingen, Germany. As such, “the approach of starting a drug screen with already approved compounds and known side effect profiles is very appealing,” explains Nave, who has consulted Pharnext on the disorder. “The overall risk to the patient seems minimal in comparison to the risk associated with completely new drugs, although the interaction of drugs is unknown and must still be carefully tested.”Pharnext used its own in-house bioinformatics platform to build its Charcot-Marie-Tooth disease network, the details of which remain confidential until the company publishes the trial data next year. As well as using the network to screen for potential drugs in silico, the company used it to predict a profile of proteins and other molecules it would produce when diseased or when healthy. This is allowing the company to screen samples (such as blood samples) from patients to look for early signs that the therapy is pushing their diseased networks into a healthy configuration. Pharnext is also planning to launch further phase 2 trials for CMT1A with combinations of different drugs to look for the most effective one.The Pharnext approach also has the advantage that the drugs are being used at far lower dosages than those used for the original indications and should therefore run a lower risk of generating unwanted side effects. Under typical circumstances, single-target drugs aimed at one protein often need to be used at relatively high doses to cripple enough of that protein to overcome the backup systems in the cell. Network-based drugs, in contrast, target multiple proteins and other molecules and so are needed in lower amounts.Bringing network pharmacology drugs to the mass market, however, is not necessarily going to be easy. Regulatory agencies such as the US Food and Drug Administration will need to adapt to evaluate novel multiple-target, network-based drugs instead of the usual single-target models they currently work with. Although such agencies are engaging with network pharma, say scientists, this process is likely to take some time. And what happens if one pharma company has a drug that is predicted to synergize with one produced by a competitor? There will be all sorts of legal, economic and business issues to be worked out before such a drug combination can be marketed.Despite these potential hurdles, some of the big pharma companies are taking notice of the network approach. Miguel Barbosa, who heads the Immunology Research division at Centocor Research and Development, a subsidiary of Johnson & Johnson, says his team has been working with network pharmacology for the past four years, having witnessed the explosion in biological data and the development of the technology to use it. “We as a field and as an industry are poised to begin to use those diverse data sets in a more integrated fashion,” he says. “We are applying this type of advanced methodology and approach day to day in how we do immunology.”For network pharmacology to succeed, biologists will have to work across disciplines and at an unprecedented scale, akin to how “big physics” is done, says Schadt. He and his colleagues have established Sage Bionetworks, an open-access online resource that helps researchers of all stripes access network biology. Encouragingly, the marrying of public, private and academic data—a crucial step toward modeling networks of cellular proteins—is already starting to happen. Barbosa says that Johnson & Johnson is forming consortia for network pharmacology with other big pharma companies, biotech and academic labs—although, as these are at a very early stage of development, the precise details remain confidential for now.“It used to be the case that it was a pretty lonely vigil. But now members of our church are cropping up everywhere.”Network scientists say that perhaps their biggest challenge is persuading 'old school' biologists, chemists and drug regulators to embrace their way of thinking. Things are changing, albeit slowly. “It used to be the case that it was a pretty lonely vigil,” says Young. “But now members of our church are cropping up everywhere.”

Priorites

2011-10-10T11:49:00.000-07:00

Daily, I determine priorities.

Priorities are not merely something I establish once a year, once a month, or even once a week. Priorities are visible in a myriad of decisions made and actions I take each day.

Being closely in touch with my inner self and my Creator Spirit assures that my priorities reflect genuine needs and desires. When I am securely centered, I am not unduly influenced by other people but know what is truly important and necessary for my health and well being.

I set

priorities when grocery shopping or planning our meals. I set them when the choice is between housecleaning, gardening, swimming or reading a book. I set them when deciding how to respond to a negative comment from a co-worker. Daily priorities reflect who I am and determine what I am becoming. I set them with care, putting first things first.

Destiny

2011-10-08T11:23:00.000-07:00

Watch your thoughts, they become your words.

Watch your words, they become your actions.

Watch your actions, they become your character.

Watch your character, it becomes your destiny.

Trying to write a simple, easy to understandable article on Stem Cell Research is not so simple and easy! But this too appears part of today's Destiny.

A Healthy Self-Image

2011-10-07T17:51:00.000-07:00

Courage is fear that has said its prayers.
-- Dorothy Bernard

No one of us is always courageous. With trepidation we embark on many journeys. Fear is dispelled each time we rely on our inner strength and trust that our lives are in good hands.

Self-talk is powerful and will prepare us to meet whatever lies ahead today. Self-talk is like prayer and quiets our fears, making it possible to give our full attention to the events transpiring. Self-talk, when positive, cultivates a healthy self-image, one that offers security, even in the face of disaster. We all carry on a dialogue with ourselves much of the time. Taking charge of the messages - making sure they enhance our personal well being - is an option always available to us.

No situation is more than we can handle. Whatever courage or strength is needed is as close as our willingness to go within, to commune with ourselves.

Stem Cell Therapy for CMT Research

2011-10-02T11:20:00.000-07:00

Charcot-Marie-Tooth disease (CMT), known also as Hereditary Motor and Sensory Neuropathy (HMSN), Hereditary Sensorimotor Neuropathy (HSMN), or Peroneal Muscular Atrophy, is a heterogeneous inherited disorder of nerves (neuropathy) that is characterized by loss of muscle tissue and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages of disease. Presently incurable, this disease is one of the most common inherited neurological disorders, with 37 in 100,000 affected.[1]

Charcot-Marie-Tooth disease is caused by mutations that cause defects in neuronal proteins. Nerve signals are conducted by an axon with a myelin sheath wrapped around it. Most mutations in CMT affect the myelin sheath. Some affect the axon.
The most common cause of CMT (70-80% of the cases) is the duplication of a large region in chromosome 17p12 that includes the gene PMP22 . S

ome mutations affect the gene MFN2, which codes for a mitochondrial protein. Cells contain separate sets of genes in their nucleus and in their mitochondria. In nerve cells, the mitochondria travel down the long axons. In some forms of CMT, mutated MFN2 causes the mitochondria to form large clusters, or clots, which are unable to travel down the axon towards the synapses . This prevents the synapses from functioning.[2] CMT is divided into the primary demyelinating neuropathies (CMT1, CMT3, and CMT4) and the primary axonal neuropathies (CMT2), with frequent overlap.
Another cell involved in CMT is the Schwann cell, which creates the myelin sheath, by wrapping its plasma membrane around the axon in a structure that is sometimes compared to a.[3]

Neurons, Schwann cells, and fibroblasts work together to create a working nerve. Schwann cells and neurons exchange molecular signals that regulate survival and differentiation. These signals are disrupted in CMT. [3]

Demyelinating Schwann cells causes abnormal axon structure and function. They may cause axon degeneration. Or they may simply cause axons to malfunction.[1] The myelin sheath allows nerve cells to conduct signals faster. When the myelin sheath is damaged, nerve signals are slower, and this can be measured by a common neurological test, electromyography. When the axon is damaged, on the other hand, this results in a reduced compound muscle action potential (CMAP).[4]

Stem Cells
A growing body of evidence suggests strongly that the use of stem cells to address the primary componants of both inflammation and demylination has a direct effect on this disease. Much of the research, that also applies, has focused on Multiple Sclerosis another demylinationg disease with a larger incidence world wide.

There is a growing body of literature supporting the contention that with stem cell therapy Schwann cells and other componants of the immune system, that adversely affect CMT patients, can be influenced to reverse their typical progressive dysfunction.

Our patients have now documented significant changes in multiple areas of function. Most notable has been in their ability to walk, maintain balance and have more consistent and higher levels of energy. These changes allow for a substantial quality of life changing affair. Interestingly we have seen progressive improvements over the period of a year post treatment. Only time will determine the nature of how much change can take place. It should be understood that currently all the CMT patients are seniors. We expect that with earlier treatment even better results can be achieved.

World Stem Cells, LLC The Power of Life

Victory Celebration

2011-09-30T11:27:00.001-07:00

A terrific lunch yesterday and wrap party at Soleil with Les Dames and friends. Thinking of perhaps an invitational event at this charming Los Angeles French Bistro with Canadian roots in the future connected with one of UCLA's performances.

2011-09-23T11:12:00.000-07:00

Prayer is neither black magic nor is it a form of demand note. Prayer is a relationship. --John Heuss

A conversation requires two parts: talking and listening. When only we are talking, that is a monologue. When someone lectures, we listen. Prayer can be a form of conversation, yet if we examine the way we pray we may find it's a monologue.

We pray to ask for answers or guidance, to express our gratitude, and to bless those we care for. It's wonderful to open up a channel to our Creator by beginning the conversation, but unless we allow time to listen we will never really develop a dialogue.

We must begin to change our way of praying. Any time is the right time. We can limit our requests so we are not listing a series of wishes or demands but adding "thy will be done." We can ask for patience to listen and then allow a few moments to listen. The answers will come to us through this form of meditation and our guidance will be given when we are truly ready to receive it. An equal balance of talking and listening will help strengthen our relationship with our Creator.

Today, pray first and then listen, to allow the Creator some time to communicate with you.

How Are You?

2011-09-22T11:14:00.000-07:00

How are you doing? How am I doing?

Just as the ivy that grows on a windowsill requires water and light, our friendships need care and nourishment. We might wish that a good friend would be there whenever we wanted. But we get so busy scrambling to cover all the bases in our lives that we lose touch with friends, even with our partner. We neglect even to ask, "How are you doing?" "How am I doing?"

In spite of our busyness, the time we take for a brief telephone call can make us feel more relaxed and less busy. These seemingly small attentions are important to friendships and instill the spirit of human warmth and care into our lives. It reminds us again of what gives us meaning and opens us up to the affectionate feelings in our partnership.

Today, call a friend you have not seen for a while just to renew your connection.

Where Do We Go From Here

2011-09-20T11:39:00.000-07:00

As a diagnosed disease, Charcot Marie Tooth (CMT) neuromuscular syndrome is still in its infancy While we have learned a great deal about it over the past century, there is still a great deal we need to know in order to better understand the illness and to devise appropriate treatments.

Many questions still need to be answered. Progress had been made toward understanding how particular mutations cause disease, but pathogenic mechanisms or the reason why the disease advances remains largely unknown. How early do we need to intervene in order to increase chances for successful outcomes? Are there special issues related to the age of the patient, especially at the age spectrum (i.e., in children and in the elderly)? What role, if any, does CMT play in look-alike disorders (e.g., abnormal immunity, endocrinopathy, nutritionally mediated neuropathies)?

How early do neurological problems actually occur, and what determines their onset? When patients endure disabling times involving pain, psychological or psychiatric issues etc., what can be done to help? What is the long term impact of bracing and palliative ankle surgery to stabilize the foot and ankle joints?

Visual artists throughout the world have rallied to support and honor of all these questions. If you haven’t seen the rave Art de Cure Exhibition, take a look at http://www.artdecureforcmt.com Unlike other awareness efforts, this assembly of gift, talent and dedication will be online for one year, making everyday one of thought, hope and inspiration.

2011-09-19T09:59:00.000-07:00

It is only with the heart that one can see rightly....
--Antoine de Saint Exupery

If we look at the world through suspicious or angry eyes, we'll find a world that mirrors our expectations - a world where tension will mount, arguments will abound, strife will be present where none need be. However, our experiences in some manner bless us, and we'll recognize that if we'll look upon them with gratitude. Everything in our path is meant for our good and we'll see the good when our hearts act as the eyes for our minds.

When we see with our hearts, our responses to the turmoil around us, the fighting children, the traffic snarls, the angry lovers, will be soft acceptance. When our hearts guide the action we can accept those things we cannot change, and change those we can. And the heart, as the seat of all wisdom, will always know the difference.

What if?

2011-09-18T12:10:00.000-07:00

What if we knew for certain that everything we're worried about today will work out fine?

What if . . . we had a guarantee that the problem bothering us would be worked out in the most perfect way, and at the best possible time? Furthermore, what if we knew that three years from now we'd be grateful for that problem, and its solution?

What if . . . we knew that even our worst fear would work out for the best?

What if . . . we had a guarantee that everything that's happening, and has happened, in our life was meant to be, planned just for us, and in our best interest?

What if . . . we had a guarantee that the people we love are experiencing exactly what they need in order to become who they're intended to become? Further, what if we had a guarantee that others can be responsible for themselves, and we don't have to control or take responsibility for them?

What if . . . we knew the future was going to be good, and we would have an abundance of resources and guidance to handle whatever comes our way?

What if . . . we knew everything was okay, and we didn't have to worry about a thing? What would we do then?

We'd be free to let go and enjoy life.

Cheer for Healthly Living

2011-09-16T12:33:00.000-07:00

If you're dog-tired at night, it may be because you growled all day.
--War Cry

Negative attitudes wear us out. Assuming the worst will happen, focusing on just our faults, constant complaining, are attitudes that bring us down. If we stumble on a flight of stairs and feel embarrassed, it's going to feel even worse if we growl and curse. We'll feel much better if we laugh at ourselves and see the humor.

People want to be around those who are cheerful. The good cheer we send out will come back to us from others who are healthy. We can choose these cheerful people as our friends, and our happiness will grow and blossom in this good soil.

CMT, MD, MW - Do you know the difference?

2011-09-13T17:43:00.000-07:00

CMT,MD & MS - Do you know the difference?

Charcot Marie Tooth disease, Muscular Dystrophy and Multiple Sclerosis are three distinct problems within the body’s neurological system. Starting at the brain, the neuromuscular system acts as the body’s master computer. Signals are sent to the muscles through the spinal cord which acts as an intermediate connecting cable. This hooks up to the peripheral nerves which are the connecting lines between brain and muscle.

Charcot Marie Tooth is a disease of the body’s peripheral nervous system (the connecting lines). CMT causes weakness and impaired sensory perception because the signal can't get to and from the brain to muscle and skin. Muscles slowly atrophy as they aren't getting the proper signals but the muscles themselves are not directly diseased. The problem lies in the nerves. CMT is a heterogeneous dominant genetic syndrome. There are currently 50 different genetic markers. Males and females are equally affected and present in every ethnicity. CMT does not affect the intellect and life expectancy is normal. But if symptoms are left undiagnosed or misdiagnosed, it can be fatal. CMT has a prevalence rate of 1 in 2500 persons and is considered a rare disease. Within the next 5 to 10 years treatment and a cure are hopefully positive.

Muscular Dystrophy is a disease of the muscle itself. It causes weakness of varying degrees. There are 9 types of MD; one in particular only affects males where the prevalence is 1 in 3000. Sometimes the heart can be involved because it is a muscle too. Also, the lungs can be affected because the breathing muscles are weak (similar to CMT, although in CMT it is because the phrenic nerves are affected which in turn weakens the diaphragm, the main breathing muscle). Muscular dystrophy can be hereditary or non-hereditary. It is characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. Affected individuals are susceptible to intellectual impairment. Dystrophic protein is found in muscle fiber membrane and functions in two ways; mechanical stabilization and regulated calcium levels. This protein acts like a spring and joins the membrane acting filaments. The main cause of Duchene and Becker types of muscular dystrophy is the muscle tissue's Cytoskeleton impairment to properly create the Dystrophic-associated protein complex. Duchene Muscular Dystrophy is often fatal in childhood and young adulthood, usually due to respiratory and cardiac complications.

Multiple Sclerosis is a disease of the central nervous system. It affects both movement and sensory perception and sometimes, thinking processes. It is not a hereditary disease. It is an inflammatory disease of the immune system in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelization and scarring as well as a broad spectrum of symptoms. The cause is unknown. Multiple Sclerosis has 4 forms, with new symptoms occurring either as indiscrete attacks (relapsing forms) or slowly accumulating over time (progressive forms). Between attacks, symptoms may go away completely, but permanent neurological problems often occur, especially as the disease advances. MS can be more common in women than men. Life expectancy of people with MS is 5 to 10 years lower than that of the unaffected The name Multiple Sclerosis refers to the scars (scleroses – better known as plaques or lesions) that form in the nervous system. MS lesions most commonly involve white matter areas close to the ventricles of the cerebellum, brain stem, basal ganglia and spinal cord; and the optic nerve. The function of white matter cells is to carry signals between grey matter areas, where the processing is done, to the rest of the body. The peripheral nervous system is rarely involved. As of 2009, five disease-modifying treatments for MS had been approved by regulatory agencies in many countries. MS has a prevalence that ranges between 2 and 150 per 100,000 depending on the country or specific population. Some ethnic groups are at low risk of developing the disease, including the Samis, Turkmen, Amerindians, Canadian Hutterites, Africans, and New Zealand Māori.

Loving Your Body

2011-09-12T09:52:00.000-07:00

Obesity is a major problem in Neuromuscular Disease and this includes CMT.

‘Love your body’ to lose weight

By Dr. Hilary Glover (at biomedcentral)

Obesity is a major problem in Neuromuscular Disease and this includes CMT.
All most a quarter of men and women in England and over a third of adults in America are obese. Obesity increases the risk of diabetes and heart disease and can significantly shorten a person's life expectancy. New research published by BioMed Central's open access journal International Journal of Behavioral Nutrition and Physical Activity shows that improving body image can enhance the effectiveness of weight loss programs based on diet and exercise.

Researchers from the Technical University of Lisbon and Bangor University enrolled overweight and obese women on a year-long weight loss program. Half the women were given general health information about good nutrition, stress management, and the importance of looking after yourself. The other half attended 30 weekly group sessions (the intervention plan) where issues such as exercise, emotional eating, improving body image and the recognition of, and how to overcome, personal barriers to weight loss and lapses from the diet were discussed.

On the behavioral intervention plan women found that the way they thought about their body improved and that concerns about body shape and size were reduced. Compared to the control group they were better able to self-regulate their eating and they lost much more weight, losing on average 7% of their starting weight compared to less than 2% for the control group.

Dr. Teixeira from Technical University of Lisbon, who led the research, said, "Body image problems are very common amongst overweight and obese people, often leading to comfort eating and more rigid eating patterns, and are obstacles to losing weight. Our results showed a strong correlation between improvements in body image, especially in reducing anxiety about other peoples' opinions, and positive changes in eating behavior. From this we believe that learning to relate to your body in healthier ways is an important aspect of maintaining weight loss and should be addressed in every weight control program."

Art de Cure exhibition and Prince William

2011-09-11T10:16:00.001-07:00

This morning I recieved some great news from painter Steven Cairney of the UK, who is one of the participants in the Art de Cure for CMT Awareness exhibition. He offered his heartfelt congratulations to me saying that the show is an absolute joy, feeding the mind and the soul, and health promoting too! What a wonderful combination, and not an easy thing to get right. But you have!

He has posted the CMT link onto Prince Willliams wall and (Princess Di's brother) Earl Spencer's too, they both have power and put their energy into good charity work, and have a lot of "clout" If they pick up a ball they will run with it!

On a more localised level, Steven was chatting to a business friend of mine the other day, sitting around with a few friends late night in his bar, as painters sometimes do! Well, while sitting at the bar last night, he used the opportunity to chat a little about the CMT awareness campaign.

He was handed a slip of paper with the contact details of the editor of The Northern Echo newspaper, along with the possible affirmation of running an article which would of course be mutually beneficial to CMT Awareness Month, his work and mine. He will run with this and info about Art de Cure on behalf of all persons with CMT.

My day couldn't have had a better start! Visit http://www.artdecureforcmt.com to see his work. This image of Sunchild is also one of his works.

Art de Cure exhibition and Prince William

2011-09-11T10:16:00.000-07:00

From Scooters To Starwars

2011-09-10T10:01:00.001-07:00

Scooters to Starwars

I caught up with Eric Jones of Manitoba for his thoughts on CMT Awareness and living well with CMT. There was a time when he once thought he was the only one with CMT. However he soon learned there are many people with CMT and joined CMTUS in 2003. “The amount of information that I gained from CMTUS is beyond description. There have been hundreds of medical articles to provide information about CMT. Even if the medical information is not relevant to me, it makes me realize that there are many research avenues happening around the world. In addition, all the personal stories that have been posted have brought me the wealth of knowledge”, he comments.

This lucky man is still hard at work at his dream job working for the Government of Manitoba as a web designer. He works from home 100% of the time. It is to the point now where if my coworkers want to see him in person they travel to my hometown and we have lunch together. For his weekly staff meetings, or any other meetings, he uses a Webcam. It took him several years to get this job. Formerly, he worked for a big bank, but resigned because there was no future in it. He returned to school to become a computer programmer which took two years. Then it took an additional two years to find his “dream job” which he has had for 6 years. Eric plans on to working at the same position until retirement. “I've realized that a web designer could work anywhere in the world, from home or from an office. So I decided to return to school to get a certificate in computer programming which included some web design and that's how I wound up working in my current position”. Eric always loved working with computers, so when the Internet explosion hit, he was front and center.

Eric believes there is a constant supply of “the wealth of health knowledge” about our CMT health. “Whether it's day to day health or research for all types of CMT you will probably find your answer at the CMTUS website,” he adds. For Awareness Month Eric will be asking friends businesses to put up posters in their stores.

For mobility, he uses a scooter full time. He just purchased a brand-new scooter as his old scooters were 20+ years old. When not using a scooter he walks on his knees in places around his house that that is not scooter accessible. He also walks on his knees to have some mobility to keep whatever muscles he has in a functioning state.

In an earlier article I wrote on Eric in 2005, his love of cooking was highlighted. “It’s fun and I enjoy the Food Network as well”, he remarks. In his younger days, he greatly enjoyed cooking; now he relies on his knowledge from a vast collection of cookbooks to give direction to people who cook, as his hands are weakening. He would still like to design his “dream kitchen” – one that is completely accessible for him. Eric eats a balance of plant derived foods including fruits and vegetables. Because of this he does not need vitamins or supplements. Part of living well for Eric also includes dental visits twice a year.

Earlier this year, Eric found himself hospitalized for 20 weeks. The first 10 weeks were spent bedridden; the next 10 were in a rehabilitation center. The accident happened as he was riding his scooter from the living room up to my bedroom and crushed into the door frame top speed. He slid off the scooter seat and landed all his weight in a confined space between the door frame and broke hix leg just below the knee. He had a cast on from toes to hip for 10 weeks

. “I did not always keep my sanity during the 10 weeks of being in bed there were a number of times that I became extremely depressed. But overall I made it through it by watching a lot of TV and listening to my iPod. Now I'm 100% healed and back to normal,” he adds. When I asked him how he stays positive, Eric responded “I watch the show ‘Lock Up’ because “at least I’m not in prison”.

Eric visits his family doctor about five times a year just to give him a quick update on how it is going and addresses any general concerns. He also visits an endocrinologist once a year for my second condition called Congenital Adrenal Hyperplasia (CAH). The visit is just to renew prescriptions and an annual blood test. He recently found a new neurologist who he plans to visit twice a year. He is about the same age as Eric, which pleases him because his current neurologist is close to retirement. Eric only goes to physical therapy if he is extremely sore from some related injury but not for CMT. He has not tried any form of alternative medicine.

Eric’s older brother does not have CMT. He's like Arnold Schwarzenegger, one big muscle. His new neurologist agreed it is important to find out what type of CMT Eric has, so he provided the paperwork for a DNA test for CMT 1A. Based on discussion with his doctor and a physical exam he speculates he may have CMT 1A. At the beginning of August, Eric went to the lab and will follow up on the test results this month.

Eric has never met anyone with CMT face to face, such as at a support group, or attending a meeting or conference.

Eric is a big movie buff of all types, especially the Star Wars series. Recently discovering that the 50 year old theater in his city has wheelchair/scooter access, Eric and friends spend good times watching the latest flicks in this historic building.

Eric still has his van from 2005. He doesn’t need to drive very much so the vehicle is still in perfect condition. His van consists of a side loading ramp which he backs his scooter into the van. He transfers over to the driver seat which is mounted on a three-way base. He uses a handbrake on the left side and a right knee accelerator. Then he pushes his right knee outwards about 2 inches to accelerate up to 30 miles (50 km) an hour. He pushes about 4 inches to reach 60 miles (100 km) an hour.

Like many people with CMT, Eric really hates the cold weather. His hands are severely affected by the cold limiting use even more than usual. He usually only goes out once a week on Saturday to do some shopping and have lunch with a friend. Apart from that, during the long winter months, he is housebound.

When I inquired how his CAH is affecting his CMT, he replied “I'm not sure how the CAH is affecting my CMT. I've never really discussed that with the neurologist. I guess now that I have a new neurologist, I will discuss that with him at some point. CAH can make a person very fatigued. So with the combination of CMT and CAH, I feel tired from the moment I wake up in the morning until I go back to sleep at night.”

Eric is confident that within the next 5 to 10 years there will be treatment for CMT. He especially hopes for a treatment that would reverse some of the effects of my CMT so that he could start gaining enough strength to stand and walk short distances. He feels with all the different avenues of research around the world it would seem impossible to not have a treatment at some point near the future.

When asked about “what advice would you give to a newcomer to CMT and to CMTUS he replied “if you've been newly diagnosed with CMT you've probably been diagnosed at the best time in history because we are probably very close to finding a treatment for CMT. If you are new to CMTUS, you have found the perfect place to gain knowledge about CMT and to make acquaintances that can relate to your CMT issues.”

Copywrite 8llGG

How Art de Cure for CMT was born

2011-09-08T13:07:00.000-07:00

Since so many people have asked how Art de Cure for CMT Awareness was put together, here's the story.

How Art de Cure for CMT Was Born

... Last February I was feeling a bit of burnout on all things CMT. Not a good thing for the Moderator! One night while surfing the Net, I came across an organization called Art de Cure – they put art in public places like doctors offices and fundraise for non-profits. I contacted their staff once or twice and said to myself “OK, I can do that here”. Meaning locally in Solvang or Santa Barbara.

So I started asking myself questions. What did I want to do? What do I absolutely love? Answer: Art. OK fine, do it. So as I ruminated on what painting I wanted to do or piece of wood to sculpt, I was also thinking ahead to September 2011 CMT Awareness Month. Aha! (I think you know where this is going…) Yes, that’s right, combine Art into some sort of CMT Awareness tool that was completely accessible to anyone with computer access. Anyone in the world, I mean why stop with just the U.S.A?

But then an even bigger Aha moment hit me one evening as I was meditating. Why not put together a virtual Art de Cure for CMT? Now I was excited! First I had to sketch out plans, what was needed, which artists would come, how I wanted to develop the site, what was my mission. First step done!

Next step was networking my way around Face Book with some artist friends and their friends. It was so refreshing to see new works; I was like a kid in a candy store. Painting after painting, sculpture, drawings, and incredible images to stir my soul. And when I say “networking” I mean networking big-time!

Then I wrote up a Call to Artists (which is in our Files now) and put it out to my FB friends and looked through artists website galleries. Artists were free to choose any work of art to exhibit; the only requirement was in size for building the website. So far so good. American artists creating an impressive body of work.

Then I asked myself “I wonder what Art is coming out of Europe now?” I continued to network on Facebook and found so many incredible works. I was reaffirmed and began asking artists from other countries for their participation. An even greater response! I had so much art in my computer I thought it would burst!

When I got to 25 artists, I thought “oh cool, this will be fantastic!” None of the artists knew about CMT, so I gave each one a crash course and provided a few links for further information. So many are interested in Art as a Healing force, so the project morphed again.

Then I began receiving more and more artwork each day. Talk about excitement! I was working with who I love, artists and CMT. This then became the recipe; a fun creative, life affirming project, free to all on our planet (free because as Founder of CMTUS I set a policy that no one would ever need to pay for CMT information – more on how CMTUS came about later this month)

Now the Art de Cure for CMT Awareness Exhibition became International! When the number of artists hit 50, I took another step forward writing and collecting artist’s bios and statements. It was serendipity that the total of artists from the USA and other countries equaled 50 – 25 USA, 25 outside the country.

Once I had all the artists confirmed I began sketching out the special website for this project. I confess I had a bit of tech help to get Art de Cure finalized. (He’s on FB too!)

So September 1 Art de Cure opened right on schedule for CMT Awareness Month and the entire year to come.

If you haven't taken the tour yet, please do and pass it on
http://www.artdecureforcmt.com/

Art Mas

2011-09-04T18:19:00.000-07:00

Think I've had too much art! The link to Art de Cure for CMT IS at http://www.artdecureforcmt.com/

Busy with Art de Cure

2011-09-04T17:52:00.000-07:00

Just realized the link isn't right. Art de Cure for CMT Awareness is at http://www.artdecureforcmtawareness.com I've been too busy with Artists, the opening, and the winetasting event, I need to slow it a bit! (No wine for me)!

Lucky Girl

2011-09-04T11:57:00.000-07:00

Lucky Girl – by Gretchen Glick

Aspiring artist Georgia Allen, age 10, is already making strides in CMT Awareness and Fundraising. The Nutley UK native has hosted a very successful dinner with Chef Marco and met the Mayor. When I asked her about greeting the Mayor she replied “the mayor was nice but he shook my hand so hard, my arm almost fell off”. Diagnosed with CMT 1A, Georgia has big plans, aside from returning to school and entering 5th grade.

With her gift of painting, Georgia has exhibited widely and regularly visits museums. Her favorite artist is a local woman named Debby http://www.lemonpebbles.com but she also likes Friedensreich Hundertwasser and one day will go on holiday in Vienna to see his paintings and buildings.

Her paintings are bold and joyful with colors. Working on paper for now, she mostly uses acrylics but also enjoys watercolor as medium. She plans on working on canvas in the future as she continues her art studies at the University one day. She is also a bit of a fashionista, liking fusion clothing similar to what Riana wears and leopard prints. She keeps painting even though her hands hurt more in winter calling for the use of handwarmers, physiotherapy and her Mum’s special hot chocolate with marshmallows.

Georgia has lots of friends but sometimes they don’t understand her challenges with CMT. She wears hinged AFOs and when she needs help with something, a buddy helps her out. She doesn’t like taking medicine for aches and pains so rest, heat and massage help greatly. “It helps, but it doesn’t get rid of it” she comments. She often gets annoyed with her doctors “who don’t listen”. Her father, sister, nanny, and two uncles also have CMT but theirs seems to be a mild form. She has met many other kids who have CMT through the CMT UK organization,

When I asked her about Chef Marco, she replied “he’s very kind, funny, and helpful. She is looking forward to doing a Master cooking class with him.

Her first decade of life has already made her a philosopher. “I think, at least, that I am not really that bad, I can do lots of things, I’m lucky”, she says. Georgia’s advice for other kids with CMT is “don’t worry, think positive things and think yourself lucky. Meet other people and help them.”

Earlier this year, Georgia’s mother did a sky dive for CMT Awareness and to benefit The Georgia Allen Fund. When I asked her how she feels about that extreme act, she says “I think Mum is brave and nice and I think she will do it again one day with me”.

To see photos and learn more about Georgia, visit http://www.thegeorgiaallenfund.com

Artists Confirmed for Art de Cure Rally for CMT Awareness 2011

2011-09-03T12:25:00.000-07:00

Artists Confirmed for Art de Cure Rally for CMT Awareness 2011

http://www.artdecureforcmtawareness.com

21 Countries represented: USA, France, Brazil, Czech Republic, Canada, South Africa, New Zealand, Sweden, Singapore, Israel, Ireland, Belgium, United Kingdom, Philippines and Spain, Germany, Malaysia, Iceland, Australia, Switzerland, Russia.

INTERNATIONAL:

1.Gary Markowitz (France) http:// www.markowitzart.com

2.Anna Brazao (San Paulo, Brazil) http://annabrazao.blogspot.com

3.Kip Bauersfeld (Prague, Czech Republic) http://www.bauersfeld.cz

4.Doug Wilke (Ontario Canada) http://www.aframestudios.ca

5.Nell Visser (South Africa) http://www.freewebs.com/faith-of- art/apps/photos/album?albumid=6962935

6.Patricia Howitt ( New Zealand) http://www.patriciahowitt.com

7.Vedran St. Art (Sweden) http://www.flickr.com/photos/vedranart

8.Harshal Desai (Singapore) http://www.hersheydesai.com

9.Yael Erlichman (Israel) http://www.erlichmanyael.com

10. Rory Coleman (Ireland) www.rorycolemanart.com

11.Olga Gouscova (Bruges, Belgium) http://www.olga-gouskova.be/home.html

12.Nicola Wills (England) http://www.nicolawills.com

13.Connie Van Winssen (Belgium) http://www.connievanwinssen.nl

14.Isabel Echevarria (Phillippines and Spain) http://www.isabel-echevarria.com

15.Rainer Baier (Germany) http://www.baier-art.de

16.Luzen (Maylaisia) http://www.luzen.org

17.Gunnar Johannsson (Iceland) http://www.gunnarjohannsson.com

18.Zlatko Vasic (Sweden) http://www.svenskakonstnarer.se/galleri/zlatko and http://www.artists.de/zlatkovasic.html

19.Steve Cairney (United Kingdom) artworks@stevencairney.com

20.Sarah Baron (Austrailia) girlquirky@sarahbaron.com.au

21.Annunziata Fiumi – Loosli (Switzerland)http://homepage.hispeed.ch/A.Fiumi-Loosli/indexe.htm

22.Annett Bank (United Kingdom) http://www.annett-bank.co.uk

23.Therese Joseph (Vancouver) http://www.therese-joseph.com

24. Veselovsky Valery (Russia-Moscow) http://bwg0827.hs.orc.ru/index.htm

25. Norbert Schling (South Africa) http://www.creativeconcept.co.za/Norbert_Schling.htm

UNITED STATES
1. Donal Keohane www.donieart.com
2. Jason Cianelli http://www.cianellistudios.com
3. Robin Frey http://www.fauxclassics.com
4. Gabrielle Gottlieb http://www.westsidewatercolors.com
5. Robin Ryan rrdca@sbcglobal.net
6. Susan Braig contact via Facebook

7. Ilham Mahfouz http://www.artistilhambadreddinemahfouz.com

8. Leslie Rhodes http://leslie-rhoades.artistwebsites.com/

9. Rita Asfour http://www.ritaasfour.com

10. Michel Croteaux http://fineartamerica.com/profiles/michelina-croteau.html

11. Kim Leutwyler PhilanthropART@gmail.com http://KimLeutwyler.com

12. Joan Jones http://www.joan-jones.artistwebsites.com

13. Catherine Badin http://www.catherinebadin.com

14. Johnny Otilano http://www.johnnyesjotilano.com

15. Carol Heyer http://www.carolheyer.com

16. Denise Perreault http://www.deniseperreault.com

17. Sharis de Jaynes http://www.sharisdejaynes.com/sd/

18. Kathi Peck Leeds http://www.kathypeck.com

19. David Leeds http://www.ahuskofmeaning.com

20. Janeen Swing-Wolek http://www.EcoFirstArt.com facebook.com/janeen.swing

21. Mark Eric Gulsrud – Seattle www.markericgulsrud.com

22. Margaret Pirrouette http://margaret-pirrouette.weebly.com

23. Kristine Dos Santos SafiraDesignsJewelry.com

24. John Solem gloriasolem@yahoo.com
25. Stacy Menin https://www.facebook.com/profile.php?id=1611986763

50 Total: 25 from the USA – 25 from outside the USA

Off to a great start for CMT Awareness!

2011-09-02T12:50:00.000-07:00

Last night's dinner at the Magic Castle was stellar - a full house of VIPS to see the Proclaimation, short speech about CMT Awareness Month, and a terrific magic show with one of the VIPs on piano!

Art de Cure for CMT Exhibition Opens!

2011-09-01T19:41:00.000-07:00

...and they said there's no way that will happen. Ha!

It Lives!

My special project for the last 6 months has been putting together "Art de Cure for CMT Awareness" this month. 50 artists from 21 countries exhibiting 364 works are rallying to honor all with CMT and to help spread greater public awareness of CMT. Art de Cure will be available every day from today September 1, 2011 to August 30, 2012.

Take the tour at http://www.artdecureforcmt.com

Serendipity and Spirituality

2011-08-31T11:28:00.000-07:00

Be aware of wonder.
--Robert Fulghum

We have days when we experience the small coincidences in life - our car breaks down and we run into an old friend at the service station; we're thinking about someone and she calls just because we've been on her mind; we ask ourselves a question and the answer appears on the side of a bus or out of the mouth of a stranger at the bus stop. These serendipitous events usually leave us with at least a bit of awe.

The more serendipity we have in our life, the more spiritually connected we are. We're tuned in, attentive, aware, and detached. We're getting responses to questions and meeting the people we need to be with at just the right moments. We couldn't have planned it better. We couldn't have planned it at all.

Serendipity is a sign that we're letting the universe organize the events that lead to answered questions and fulfilled dreams. Life becomes a process of unraveling a mystery.

Muscle Targeted Gene Therapy of CMT is Dependent on Muscle Activity

2011-08-28T16:56:00.000-07:00

Wow. This is certainly interesting news. Leave it to the Europeans for the best work.

http://www.intechopen.com/source/pdfs/17937/InTech-Muscle_targeted_gene_therapy_of_charcot_marie_tooth_disease_is_dependent_on_muscle_activity.pdf

Finding Happiness

2011-08-28T11:34:00.000-07:00

Whoever is happy will make others happy, too.
--Anne Frank

Anne Frank had good reason to be unhappy, full of fear, and deeply discouraged. Years of her life were spent in a small apartment hiding from the Nazis who wanted to destroy her and her family.

Yet even in this little hiding place she had happiness. It was something she had inside which did not depend on what happened around her. She had riches of the heart. She had faith that kept her going. She had love and concern for her family and others, which made even a restricted life very rich with feelings. It is tempting to believe that we will be happy when we have something outside ourselves, which will make us happy. But happiness is not something we have to find outside; the seeds are in our hearts already.

STAR Award Nomination

2011-08-25T12:42:00.000-07:00

STAR Nomination

I would like to nominate Gretchen Glick for the STAR Award. Gretchen was diagnosed with CMT as a child and as adult found out it was possibly a recessive form of Type 2. Always high energy in creative pursuits, she forged her way through college and graduate school, taking her M.A. in Art History into the museum business world. From there she honed in her natural gifts of public relations and fundraising and became a much sought after Development Director for numerous museums, non-profits and private trusts.

In 1999, she founded The CMTUS Trust which hosts the popular global CMTUS discussion network with a database now exceeding 10,000 people. Gretchen is friendly, outgoing and generous to all who meet her. She has studied CMT in depth for 14 years, authored one book and numerous research articles for her peers. She is always the happy voice on the phone answering a question, making suggestions, or simply ‘listening’ to a person in need. Her patience and kindness to all in the CMT community is stellar. And if she doesn’t know an answer, she will find one!

She has won numerous awards along the way, including Outstanding Achievement from the General Federation of Women’s Clubs, an Alumni Career Achievement Award from CLU and several nominations for Woman of Worth and CNN Heroes. She is published in several of the Who’s Who directories and is a much sought after Life Coach for those living with CMT, in addition to accepting speaker requests on “Life with CMT”.

In the year 2000, Gretchen single handedly began the First CMT Awareness Campaign, using violet ribbons tied with a special knot. Approximately 1 million of these were distributed at fairs, festivals, arts and musical events. Her team of volunteers not only hand made the ribbons, but also spread out in different states with much success.

Her own CMT does not impact her daily life, with only in-shoe orthotics and one medication for hand tremors, she works full time in the arts, continues serving as Owner/Moderator of CMTUS 24/7, exercises in the pool, manages homelife, tends her garden and gives attention to an all encompassing spiritual growth to keep her emotionally fit and stress free, with the ability to help anyone in need.

Although Gretchen does not have children (she did not want to pass CMT to offspring), she’s a volunteer at a Fijian Orphanage and School, raising funds for simple needs: school uniforms, books, computer equipment. She travels to Fiji several times a year to see her ‘kids’ and meet with staff to ascertain special projects. She is profoundly affected by “jet lag” and for the first 2 days in the country, she sleeps 12 hours each night allowing her CMT body to adjust to the time difference.

Gretchen does not believe she must prove anything by being a person with CMT. She’s a born leader and much admired wherever she goes. Working with her is a pleasure, as she has a knack for making projects look like fun.

In the past 4 months, she has curated an International online exhibition “Art de Cure for CMT” which will debut September 1, have it’s own website and run until Aug. 30, 2012. In addition, she has developed a strong volunteer core who assist in planning events for CMT Awareness in the Southern California area. Last year she connected with a local vintner and set up a model awareness and fundraising plan for support groups to utilize.

Gretchen was formerly a support group leader and began the first Spanish speaking group, as well as a Caregiver support group. She guided three groups into the beginnings of STAR program, and then helped the Caregivers and Spanish Speakers become their own specific non-profits.

Gretchen is also active as a public servant in her city, serving as a Commissioner with the Parks and Reek department. In addition to arts and culture, her interests are travel, collecting antiques, biking and horses.

Submitted by Ben Bernard
Newport Beach, California

Believe You Can!

2011-08-22T11:46:00.001-07:00

A man of courage is also full of faith.
-- Cicero

Faith and courage walk hand in hand. Courage empowers us to act in favor of what we believe, but cannot know. Courage is animated by the vision of faith. It doesn't take any faith to perform an action that doesn't require a risk. Only when the outcome is uncertain, and the effort itself a feat of daring, must faith and courage come on the scene together to get the job done.

To reach out to another, if we have known frequent rejection, is to act courageously in spite of an uncertain outcome. To stand firm in a decision, if we have always given in and given up, is to back our faith in a most daring and courageous way.

Many people, who never think of themselves as spiritual, are excellent models of faith because they continually reach out for what is not common in their lives. Because they believe, they're willing and able to take the risk.

Today, I can do what I believe I can do.

Love the Questions

2011-08-21T12:00:00.000-07:00

Be patient toward all that is unsolved in your heart and try to love the questions themselves.
--Rainer Maria Rilke

We all carry problems and discrepancies within us, quandaries that are not easily answered - and we have bigger questions about life and the world. Why do I have CMT? Why wasn't I diagnosed in my younger years? Can my life be happy ? How should I handle the CMT "secret" that I carry? Where am I emotionally and spiritually in living well?

We are on a journey and, in some ways, this journey is a quest for answers. The questions give energy and direction to our seeking. We cannot expect to get quick or easy answers. And some questions will always remain just that: questions. But we can learn to be patient with ourselves, tolerant of our incompleteness, and always curious about how it will all turn out.

Look for The Good

2011-08-18T11:16:00.000-07:00

Nothing is good or bad but thinking makes it so.
--Shakespeare

Look for the Good

Life is an interpretive experience. What happens is less important than how we respond to our circumstances. An intense stimulus that some people report as pain others report as pleasure. It is we who decide what the interpretation will be.

Are you a "good finder"? A recent study of the country's millionaires showed that the most common trait they all shared was the ability to discover good in any situation. This trait is also common in "triumphant survivors" - those individuals who overcome adversity and emerge strengthened and renewed.

A sincere spiritual seeker suffering from a chronic illness wondered, "Why haven't my prayers been answered?" One day, in deep meditation the reply came: "Look for the good in your situation and you will see that the answer has already been provided." Suddenly this woman realized that her crisis provided a wonderful opportunity. She embarked on a program of nutrition, exercise, and yoga, which led to a dramatic improvement in the quality of her life.

Abraham Lincoln once said, "Most people are about as happy as they make up their minds to be." Your state of mind is up to you. Choose now to look for the good.

Artists for CMT Unity

2011-08-15T12:21:00.000-07:00

From one of the esteemed artists of "Art de Cure for CMT" comes this statement "I am pleased and honoured to be asked to join in unity for such a truely health promoting cause."

The Healing Power of Art

2011-08-09T11:25:00.000-07:00

“Physicians and nurses are discovering that art can all have profound healing effects on their patients. Art brings to the human spirit a sense of freedom and joy. The spirit freed helps the body heal. Replacing fear with hope and darkness with light is the essence of modern body-mind-spirit medicine.” (Source: "Creative Healing," by Michael Samuels, M.D. & Mary Rockwood lane, R.N., M.S.N., Ph.D.)

In just a few short weeks, the “Art de Cure for Charcot Marie Tooth Neuromuscular Disease Exhibition opens online to bring much needed public health awareness of a most challenging inherited neuromuscular disorder. While CMT was officially ‘named’ in the late 1880s by Jean Martin Charcot, research studies on primates have shown this disease has been in the human family for 6-7 million years. Yet many people are unaware of it as well as their genetic predisposition.

This need for greater public health awareness and healing for people with CMT, their families and friends, has been created by a stellar convergence of International artists. In this exhibition, artists are also honoring all children, teens, adults and seniors who are physically challenged on a daily basis.

Why not take a break from games and small talk for a few minutes and visit the Art de Cure Facebook page and a preview of the exhibition.

Don't have a Facebook Page? Get one! It's easy. Just go to Facebook.com and sign up. It's free and full of interesting information, new friends, and opportunities.

Goals

2011-08-06T11:23:00.000-07:00

If an idea, I reasoned, were really a valuable one, there must be some way of realizing it.
--Elizabeth Blackwell

These words were written by the first woman who earned a medical degree. They're useful to anyone who fears that their most precious dreams are doomed to failure.

If our dreams are valuable ideas, they will be useful goals. If they're childish fantasies, they won't, although those can be fun. It's important to distinguish the ones we can achieve from the ones we can't. The first kind will nourish us, like bread; the others, like candy, won't.

We have a responsibility to those nourishing dreams, because they come from what's best in us. Our responsibility is to live so that the dream might be realized. When dreams become goals, they have a way of calling us forth. Goals organize our lives, so that we may reach them.

Reaching my goal is never as important as the progress I make.

News for CMT Arrestment in Tubastatin A

2011-08-02T11:36:00.000-07:00

Mice point to a therapy for Charcot-Marie-Tooth disease

http://www.eurekalert.org/pub_releases/2011-08/vfi-mpt080211.php.248.233.147

VIB researchers have developed a mouse model for Charcot-Marie-Tooth (CMT) neuropathy, a hereditary disease of the peripheral nervous system. They also found a potential therapy for this incurable disease. The treatment not only halted the damage to the nerves and the atrophy of the muscles, it even succeeded in reversing the symptoms. The research was conducted under supervision of Wim Robberecht en Ludo Van Den Bosch from VIB-K.U.Leuven, in collaboration with the team of Vincent Timmerman at VIB-University of Antwerp. The study was published in Nature Medicine.

CMT: a collection of neuropathies
Charcot-Marie-Tooth (CMT) disease is the name for a collection of hereditary disorders and affects approximately one in 2,500 individuals, making it the most common inherited disorder of the peripheral nervous system. CMT is characterized by loss of muscle tissue due to denervation and by sensory abnormalities, both predominantly in feet and legs but also in the hands and arms in advanced stages of the disease. Persons with CMT can be affected moderately to quite severely. It is presently not possible to cure or prevent CMT, which affects both children and adults. Research into the molecular biological process leading to CMT is important, because it contributes to the development of good diagnosis and offers possible treatments.

Earlier work by VIB researchers showed that some CMT patients have mutations in HSPB1, a gene coding for the 27 kDa small heat shock protein B1, a protein that plays a role in many stress-related molecular processes in the body. Until now, it was unclear how mutations in HSPB1 could lead to degeneration of the nerve bundles and to muscular weakness.

Mouse model for CMT
The core of the study by Constantin van Outryve d'Ydewalle consists of the construction of a mouse model for CMT. The researchers expressed the mutated human HSPB1 gene in mouse neurons. The mouse model develops motor symptoms, muscle atrophy and weakness, foot deformities and steppage gait, all very similar to symptoms observed in affected individuals. Furthermore, the mice develop sensory problems that also occur in CMT patients. Pathological examination of the nerves of the CMT mice shows that the contact between the nerve endings and muscles is disturbed.

Axonal transport deficits
The CMT mice provide the unique possibility to isolate and culture affected nerve cells, making it possible to investigate what exactly goes wrong in the sick nerves. It was discovered that the transport of mitochondria (the cellular power plants) within the axons is severely disturbed in the neurons from symptomatic CMT mice, most likely because the tracks along which the mitochondria are transported (microtubules) are damaged. This could lead to a chronic lack of sufficient mitochondria and other transported cargoes at the nerve endings, causing the nerves to degenerate.

Possible treatment of CMT by HDAC6 inhibitors
These new insights also open possibilities for treatment, because the mitochondrial transport in nerve fibers is known to be affected by tubulin deacetylation, a posttranslational modification of the building blocks of microtubules catalyzed by histone deacetylase 6 (HDAC6). Inhibitors of HDAC6 do not only reverse the axonal transport deficits in vitro, treatment of the CMT mice with HDAC6 inhibitors also halts the damage to the nerves and even succeeds in reversing the symptoms, most likely by muscle reinnervation. The most specific therapeutic molecule used in this study (Tubastatin A) was made by Alan Kozikowski from the University of Illinois at Chicago (USA).

Mouse medicine is not the same as human medicine
There is still a long way to go before these drugs will become available for patients. Many experimental drugs – even those that are successful in animal models – fail during clinical trials due to problems with safety or the lack of therapeutic effectiveness. Still, the results of this study are important not only because of the CMT mouse model that replicates the symptoms of the human disease; it also opens perspectives for possible new treatments of an incurable disease.

Other diseases?
Reduced axonal transport in neurons is also observed in other neurodegenerative or neurological diseases, opening the door for further investigations into the effects of this new therapeutic strategy in other diseases. Further scientific research is crucial to solve this issue.

A Work in Progress

2011-07-30T11:30:00.000-07:00

What would it be like if you lived each day, each breath, as a work of art in progress? Imagine that you are a masterpiece unfolding, every second of every day, a work of art taking form with every breath.
-- Thomas Crum

So many of us avoid living in the present moment. We worry about the future.

Daydreaming and pondering are necessary in moderation, but we must try to stay in the present moment for most of the day. To do this, we return to the most basic element - our breath. We concentrate on taking deep breaths. Breathing is simple. When we return to the simplicity of breathing, we automatically simplify our life by focusing only on what's happening to one part of our body in one moment in time.

When faced with worry, indecision or uncertain condition, we can slow down and breathe deeply focusing on the unique creation we are.

Final Vernissage Begins

2011-07-29T11:41:00.000-07:00

As the final vernissage begins, 50 internationally renowned artists are rallying for Charcot Marie Tooth (CMT) neuromuscular disease, beginning September 1 for CMT Awareness Month. An innovative concept, “Art de Cure for CMT” is an online exhibition honoring all people throughout the world who have CMT and creates a greater public health awareness of this little known genetic disorder. These artists collectively recognize that CMT disease is a 24/7/365 battle for more than 6 million people and have put a new “face” on CMT Awareness. They agreed the exhibition will run through the year until Aug. 30, 2012 when a celebratory finassage takes place.

25 artists from the USA and 25 artists from 21 foreign countries are proud to honor all people who manage to live with great uncertainty of the progressive nature of CMT while creating a difference in how the public perceives genetic health education. The disease is not just about the extremities, it can also affect the phrenic nerve which controls breathing, and the heart muscle that keeps body ecology running smoothly.

Believing in Richard Kamler’s statement, this unique group of talented and diversified visual artists have come together to stand up for greater world CMT awareness. "Art is our one true global language. It knows no nation, it favors no race, and it acknowledges no class. It speaks to our need to reveal, heal, and transform. It transcends our ordinary lives and lets us imagine what is possible."

The exhibit was curated by a member of the CMTUS network and is part of a larger effort of other CMTUS members and friends who have created popular events such as a Fall/Winter trunk show, a “Glee for CMT” musical/vintage fashion night, wine tastings, and a sailing regatta along the California coast ending with dinner and a live auction.

CMT Awareness Month, September 2011 is an opportunity for the entire global community to fire up all engines—and to use all communication resources—to drive the dialogue on CMT so:

- the general public understands CMT better;

- children and persons with CMT receive earlier diagnoses and better access to therapies;

- health care providers partner with people with CMT to improve their care and quality of life;

- urgently needed resources for the CMT community are given a priority, including increased funding for CMT research.

Live Big!

2011-07-28T11:33:00.000-07:00

Live big! ---Brady Michaels

Sometimes, that's the best advice we can hear. Win or lose succeed or fail, go for it, and go all the way. As my flight instructor told me on the first day of flying lessons, "Keep one hand on the throttle and one hand on the yoke." "Aahhhhh!" I would say during my early lessons as the plane lifted into the air, butI kept the throttle pushed all the way in.

There are times when it's wise to be cautious. And there are times when the best thing we can do - the only thing we can do - is go for it by living big. Ask him/her out. Request the raise. Say no - and mean it. Learn to drive a racecar or climb a tall hill. Learn to snorkel or surf. Dreams remain dreams until you act upon them. Then they become real life.

Will you throw a few coins into the homeless mans hands, or will you bring him a hamburger and fries from the local fast-food place? Will you do an average job at work, or will you look for ways to go big - really give it your best - in the everyday areas of your job? Will you put your all - your heart and emotions - into the relationship with the people you love? Will you wait for another, more convenient time to pray, or will you start genuinely trusting God?

You don't have to get a life. You've already got one. Live it, and live big.

Creative People

2011-07-20T11:03:00.000-07:00

Creative people who can't help but explore other mental territories are at greater risk, just as someone who climbs a mountain is more at risk than someone who just walks along a village lane.

2011-07-17T12:09:00.000-07:00

If one advances confidently in the direction of his dreams and endeavors to live the life which he has imagined, he will meet with a success unexpected in common hours.
--Henry David Thoreau

Recently a filmmaker friend approached me with good news. He had just received a grant to do a documentary. "I can't believe it," he said. "I'm finally getting paid for my work. I can't believe how lucky I am to be doing this."

After our conversation, I thought: "This person believes that he is earning a living in spite of doing what he loves; but the reality is just the opposite. It is because he is following his passion that he prospers. As he aligns himself with his higher purpose, the Universe cannot help but make straight, smooth, and perfect his way."

People who say, "Be practical," don't realize that following your heart is the most practical thing one can do. There is no greater way to ensure success than being true to whom you are. On the other hand, there is nothing more likely to block that success than turning away from your calling. Living at cross-purposes with your true nature creates struggle and lack of fulfillment at a deep level. It is hard to be someone other than yourself.

The lesson is clear: As impractical as it may sound, the safest and most secure way to lead your life is to follow your dream.

Coming Attractions from Art de Cure

2011-07-09T12:12:00.001-07:00

Art de Cure For Cmt Awareness Coming Attractions Slideshow: Gretchen’s trip from Solvang, California, United States to 25 cities including United Kingdom, France, Germany, Canada, New York, New Jersey, Sweden, Croatia, San Diego, San Francisco, London, Los Angeles, Paris, Seattle, Boston, Madrid, Melbourne, Dublin, Santa Fe and Glasgow was created by TripAdvisor. See another United States slideshow. Create a free slideshow with music from your travel photos.

"I AM GOING TO MAKE IT HAPPEN!"

2011-07-03T11:39:00.000-07:00

Say it... shout it... believe it... "I AM GOING TO MAKE IT HAPPEN!" 2 Months to go until Art de Cure debuts for CMT Awareness Month.

Art de Cure for CMT Has a Facebook Page!

2011-07-01T16:26:00.001-07:00

Here's something new, a prelude of what's to come in September's Art de Cure for CMT disease International Exhibition. If you and your friends are on Facebook, please visit the Art de Cure for CMT page and "like". Then ask those friends to ask their friends,

Taking more steps toward Awareness Month in September which everyone can be a part of. Honor, Health, Hope.

http://www.facebook.com/pages/Art-De-Cure-For-CMT/107052702718539

Stem Cells To Help CMT Treatment

2011-06-25T08:56:00.000-07:00

Since the beginning of this month, the NIH has quietly kept adding ES cell lines to its registry, bringing the total tally up to 128. The latest additions include the first such cell lines derived under good manufacturing practices guidelines for human clinical use, plus several related to disease models: two are affected by Charcot-Marie-Tooth disease, an inherited neurological disorder, and three lines carry at least one mutation linked to congenital nephrotic syndrome, a disease characterized by protein in the urine and swelling of limbs.

“There is no doubt that reprogrammed neurons from human ES cells will facilitate work on the mechanism of neurological disease, permitting analysis of molecular mechanisms and testing drug effects that might stabilize unstable proteins,” said Miriam Meisler, a geneticist at the University of Michigan who earlier this month reported a mouse model of Charcot-Marie-Tooth disease.

The Power of Now

2011-06-22T11:01:00.000-07:00

If a man can carve something out of wood, he is just as much a creator as a man who works with words.
--Clara Glenn

It's really not what we do in life that matters, but how we do it. To clearly understand this, here's an example. We can all remember dreading a project that needed doing - maybe mending some pants or replacing a screen in the back door. First, we couldn't find our glasses to thread the needle, and then we stuck ourselves with the needle, drawing blood that promptly got on the pants. Or we hit our index finger with the hammer as we attempted to install the new screen. Our recollections are endless. Interestingly enough, our personal attitudes always directly controlled the success we had with the project.

What does this mean to us now? It suggests that if we are fully attentive to whatever we pursue, our experience of it will be significantly different. We are competent to handle anything that needs our attention. In most cases, we'll be more than competent. And if we have a real desire to do the job, we'll excel at it, providing we give it our undivided attention.

2011-06-21T10:44:00.001-07:00

Flowers in the Field of Life

2011-06-21T10:44:00.000-07:00

We should be careful to get out of an experience only the wisdom that is in it - and stay there, lest we be like the cat that sits down on a hot stove lid. She will never sit down on a hot stove lid again... but also, she will never sit down on a cold one any more.
--Mark Twain

"Last night I asked for help, but the person couldn't give it to me. Tonight I'm not going to ask because I'll be refused." How often I hear this! One person has been rejected, so now the whole world rejecting them. In comes the false belief if one person lets us down, everyone else will too.

Such thinking, as negative as it is, can provide safety. If a person believes she/he can't trust anymore, then they won't. But in this mindset there won't be any self-growth. By condemning everyone, it becomes impossible to see those who want to help.

To find help ask several people. If a few people turn away, we do not let go of hope. There are many flowers in the field of life, but to pick the best, we need to look at them all.

Building Bridges

2011-06-19T11:31:00.000-07:00

Grief may well be a pathway to our deepest connections.

People often say, "I don't want to burden you with my troubles, you have enough to worry about." Yet sharing our troubles with our partner or close friends lightens our burden and restores our balance. Telling someone our experiences and how we feel about them helps us find and create the meaning that lurks behind them, even though they at first seem only crazy and random. Sharing with others pulls us out of isolation and brings our friends and mate into the circle of our lives.

We may be surprised to feel the knots in our stomachs loosen when we tell our stories and recount our worries or grief. Grief may make us feel more alone than anything. But it may also be a pathway for our deepest connection with each other. When we reach out and talk with our friends or mate, we break down the wall of isolation and build bridges that connect us.

Breakthough in Stem Cell Research for CMT Disease

2011-06-17T11:29:00.000-07:00

A major breakthrough out this week from Harvard - The embryo from which this hESC line (human embryonic stem calls) was derived was determined through PGD to be affected with Charcot-Marie-Tooth disease (CMT). This paves the way for NIH grant funding and a totally new paradigm in the quest for arresting CMT disease.

The Immediate Moment

2011-06-17T10:54:00.000-07:00

The past has flown away. The coming month and year do not exist; ours only is the present's tiny point. --Shabestari

We are always tempted to look back and to look ahead. But what we most need to do is be present in this moment, with ourselves, with our loved ones and friends, and with our experience right here and right now. When we are lost and asleep in using days wastefully, we can not be emotionally present. Our thoughts are jumbled and create mental stress which in fact harms body ecology.

One way we become more present in the moment is to practice gratitude. We can always name a few things we feel grateful for - small and big things, funny and serious things. Looking through the lens of gratitude brings us into the immediate moment.

Attitudes and Limitations

2011-06-09T12:15:00.000-07:00

Attitudes and Limitations

What we consider our greatest strengths can also be our greatest weaknesses.

Excessive pride in "being able to handle everything," for example, may result in our taking on other people's responsibilities. In "taking over," we often lessen another's desire to meet his or her own obligations.

A boastful "I'll do it myself!" attitude can also mask a desperate feeling of inadequacy. Having a constant drive to prove our worth to others, we may trample on, or ignore, the needs of those around us who are just as eager to exhibit their competency and worth.

What are some other examples of virtues becoming vices?

Determination, to excess, becomes obstinacy and stubbornness. Honesty, when misdirected, is synonymous with gossip and slander. Sympathy and concern, overdone, can cripple and smother.

Today make a list of ten of your strengths and weaknesses. How has acting on each of these virtues and vices created joy or sorrow in your life? Be aware that strengths can be our worst enemies if abused.

Find Your Talent

2011-05-31T11:57:00.000-07:00

A man is rich in proportion to the number of things he can afford to let alone.
-- D. Thoreau

Conscious, careful selection of those activities, situations, or people to whom we'll devote attention is all that separates centered, serene people from harried men and women. All of us are bombarded by myriad requests for some form of personal involvement. The temptation is great to attend to first one thing and then another, passively and superficially. However, our lives are enriched only when we commit ourselves to a deeper level of involvement, and to the few, rather than the many.

The talent given each of us shines forth if it's been nurtured, coddled, encouraged. We must become immersed enough in a project or an experience to lose self-conscious reservations if we're to discover the real weight of our talent. We know ourselves fully only when we're able to let the talent within define the posture without.

The Wealth of Health

2011-05-30T11:16:00.000-07:00

CMT Awareness Month (September 2011) plans from CMTUS members and friends include an invitational Trunk Show in Beverly Hills,Sept. 8, followed by a weekend Regatta for Awareness from Newport Beach to Avila Beach Sept. 9,10, 11,then a reprisal of the already sold out "Glee for CMT" - (this year including vintage wear the kids are collecting Fri. Sept 16), followed by a Birthday Party for CMTUS 14th year Sept. 21, and of course every weekend is winetasting at Bella Cavalli's "Boots and Bottles".

Our newest awareness plan is "30 Days, 30 Ways" - easy ideas for everyone to do right from home. Our poster has been accepted as a Public Service Announcement on several TV news stations/affiliates, running the entire month. And of course many guest writers/posters on "The Wealth of Health" CMTUS Awareness theme.

Perhaps the biggest event of all, is the International CMT Awareness Art Exhibition, now in Phase 3, with a global selection of artists rallying for greater CMT Awareness in the public health arena.

Sail

2011-05-22T17:29:00.000-07:00

If we see the exact same event from a different perspective we will see an entirely different event. We cannot control the wind... but we CAN control our sail as it catches the wind. Learn to set the sails of your perspective and use the winds to move you forward toward your goal.

Meet Reagan

2011-05-20T16:23:00.000-07:00

Wrapping up Peripheral Neuropathy week now with a cool video of a young gal named Reagan who has CMT. It is very educational on what CMT is and is put to a neat song (Just the way you are by Bruno Mars) with cool pictures of Reagan. It is very inspiring. Enjoy! http://secure.smilebox.com/ecom/openTheBox?sendevent=4d546b304d7a637a4e7a6b3d0d0a&sb=1

Optimistic and Happy

2011-05-16T09:59:00.000-07:00

Spring is when you feel like whistling even with a shoe full of slush.
--Doug Larson

Life is never just one thing. It is quite possible to feel optimistic and happy even when some things are not right with us. An optimistic outlook gives us energy to handle the harder things that we have to deal with. Research shows that people who have a positive attitude have a stronger immune system, are healthier, live longer, and are even more likely to recover from serious illness.

To believe in hopeful outcomes is largely a matter of choice. Many of us have experienced big disappointments and defeats in life. But having come this far, we can look back and see that somehow we had the capacity to deal with it. We believe in hopeful possibilities. We can't say that things will always turn out just the way we hope, but that we can manage with whatever happens.

Art de Cure for Charcot Marie Tooth Disease Awareness Rallys

2011-05-12T11:46:00.000-07:00

Artwork for my project Art de Cure for CMT neuromuscular disease is coming in quickly now. It's an exciting project to create an international exhibition to honor people with CMT, create greater public health awareness and to see the art community rally in support.

Arts de Cure for CMT Neuromuscular Disease

2011-05-08T11:53:00.000-07:00

CMT Neuromuscular Disease International Awareness Month is September 2011. "CMT" is a moniker for 'Charcot Marie Tooth' - named after three European doctors in 19th century Europe and is a serious disorder affecting nerve signals to the muscles. In preparation for this special month I am curating an international on-line exhibition of world reknown artists to rally together for 'the cause'.

Artists from Singapore to Zurich and in between are participating in support of public health awareness of this often misdiagnosed, genetically inherited disorder. I am creating a very unique online gallery highlighting all the artists and their work in honor of all those with this disabling disease.

(for more about the disease, see the CMTUS Network I created in 1999 at www.cmtushope.info and also http://en.wikipedia.org/wiki/Charcot%E2%80%93Marie%E2%80%93Tooth_disease (probably more than you want to know!)

This is not a juried exhibition and there are no fees or donations required. I am just trying to enlist the help of professional artists for September 2011 CMT Awareness Month. CMT affects 6 million people in the world (or more) but many may have it and not know it. I'm trying to change that through my efforts in the written form (on the CMTUS network and also Facebook)

With the addition of Arts De Cure for CMT Awareness there will be a new website where your art will be shown. Since CMT is an inherited global disease, artists from all countries are welcome to participate.

Your work will appear exactly as you send it to me (by June 15) You may wish to send a piece of work you already have, or you may submit a work special to our theme "The Wealth of Health".

I will include a short bio on you and contact info should someone wish to purchase and be in direct contact with you. Your artwork will be seen by millions...so I hope you will say "YES" to participating in this magnanimous undertaking to rally greater public awareness of Charcot Marie Tooth neuromuscular disease.

Your work can be sent to me in jpg format at gretchen.glick@verizon.net Please contact me if you have any questions on this project. I'm also on Facebook.

Solutions

2011-05-08T11:32:00.000-07:00

No matter what faces us - an unhappy relationship, a serious operation or illness, a feeling of uselessness or helplessness - it is vital to realize that there is a solution.

We must not expect that the solution to our problem will bring us immediate peace of mind. Focusing our energies and emotions on the answer - not the problem - will, however, alleviate much of the futility and frustration we feel.

A medical doctor, George S. Stevenson, wrote, "The solution may not give you everything you want. Sometimes, it may give you nothing but a chance to start all over again. But whatever little it gives you is much more than you give yourself by letting your emotions tear you apart."

Jewels

2011-04-30T11:53:00.000-07:00

...there are many sham diamonds in this life which pass for real, and vice versa, many real diamonds which go unvalued.
--W. M. Thackeray

It's high praise to say that someone is "genuine - the real thing." We use the image of jewelry when we talk about character: "Pure gold - 14 karat - rings true - a diamond of the first water - a pearl." The qualities of beauty and rarity make gems precious to us, and by using the same language to describe people, we imply that real personal worth is equally beautiful, and equally rare.

Yet it's within everyone's grasp. We all agree on the valuable character traits: honesty, loyalty, openness, courage, humor, and the capacity for love. Imitations won't do.

I needn't worry about whether someone else's qualities are genuine. I know what I admire and I have plenty to do polishing my own.

New CMT Book Written!

2011-04-25T19:34:00.000-07:00

News from Spain is that Dr. Paolo Vinci has written a new book "CMT and Disability" and it will soon be published. Dr. Vinci's book "Rehabilitation Management of CMT" helped many, many people understand the inner workings of nerves and the stages of the disease. It is by far the most definitive book about Charcot Marie Tooth disease.

Abilities

2011-04-09T17:50:00.000-07:00

Rebellion against your handicaps gets you nowhere. Self-pity gets you nowhere. One must have the adventurous daring to accept oneself as a bundle of possibilities and undertake the most interesting game in the world - making the most of one's best.
--Harry Emerson Fosdick

What are we doing with what we've got? Instead of despairing over our lack of abilities in certain areas, are we doing the best with the talents we've been given?

All of us have unique gifts and abilities. Some of us work well with our hands; others are gifted at working with abstract ideas. Whatever our abilities, we would do well to concentrate on bringing those we can do to fruition rather than focus on our limitations.

Greek philosopher Epictetus put it this way: "He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has." German poet and dramatist Goethe said, "The man who is born with a talent which he is meant to use finds his greatest happiness in using it."

Let's not concentrate on our handicaps as much as on our abilities. We know we've been given all we need to make our lives a success.

Happenings

2011-04-08T11:22:00.000-07:00

So much going on now with the advent of Spring. iPS (Induced pluripotent stem cells), and ES (embryonic stem cells) all showing promise for treatment of Charcot Marie Tooth disease in laboratory models. As long as the federal government can stay out of the way, there is an unexpected hope for new life of nerves and muscles. But only private funding in California has proven this so far.

Additional information about Curcumin research in laboratory animals that is promising for CMT treatment. The specific method of delivery being Curcumin disolved in oil with the outcome showing increased axonal density.

And with the second round of NT-3 human clinical trials about to begin the good news continues.

A rehabilitation study (not yet recruiting) Treadmill, Stretching and Proprioceptive Exercise (TreSPE) Rehabilitation Program for Charcot−Marie−Tooth Neuropathy Type 1A (CMT1A), is especially important for QOL (Quality of Life). Sponsored by the University of Genoa, a total of 92 patients will be enrolled in the study and treated in a controlled, randomized, single blind, way. To recruit a high number of patients with CMT1A the study will be multicentric and will comprehend four of the most active clinical centers in the field of CMT, in Italy.

But this is not all. On a lighter, but just as important note, are the beginnings of CMT Awareness Month (September 2011) and the "Art de Cure for CMT" online Global Art Exhibition. Bringing the Arts together for the cause, as well as celebrity wine tastings, a Vintage Fashion Show, among other events, raises the bar and guarantees major steps in highlighting global CMT public health awareness.

Sneak Previews

2011-03-27T11:34:00.000-07:00

Coming up in April is a mass of brilliant new CMT research:

CMT X in Women

Mutational Spectrum of Type 2

Oral Curcumin as Treatment

HSMN X linked to Type 2

13 different NEFL mutations have denovo mutations

Delayed Schwann cell mutations

Rapid gene identification

Curcumin treatment for improved strength in CMT 1B

Children with CMT 2A

Children's pediatric scale

Lipid abnormalities in CMT 2A

and much more!

CMT and Peripheral Neuropathy on XM Radio

2011-03-25T11:47:00.000-07:00

What a find. Good to learn more about CMT disease, Chronic Neuropathic Pain and Peripheral Neuropathy on NeuroFrontiers on XM Radio Show Season I

Show via XM Satellite Radio (Channel 160) and online as a live stream or downloadable podcast (mp3): http://www.aan.com/globals/axon/assets/5640.mp3

NeuroFrontiers is produced in collaboration with the American Academy of Neurology and explores new research, diagnosis and treatment in all areas of neurological disease. This series also addresses the most relevant clinical topics, trends, news and advances pertaining to all areas of the practice of Neurology.

The show is hosted by AAN member Anthony Alessi, MD, FAAN, and covers a 15-minute topic every week through May. Shows feature interviews with AAN members on a variety of neurology issues, as well as notable news, editorial and clinical discussion, and other hot topics pertaining to neurology and the Academy, such as AAN practice parameters and position statements wherever applicable.

2011-03-19T10:43:00.001-07:00

Big news is on the horizon with "Human induced pluripotent stem cells as a model for
Charcot Marie Tooth disease type 2A" . This is a big deal for all with CMT syndrome. Key aspects are new and of major scientific importance and will be introduced at the April 2011 meeting of the American Academy of Neurology. Even bigger news is that these pluripotent stem cells are capable of affecting more than one organ or tissue. This means both muscles and nerves may benefit. While still in a laboratory model, this is the first known stem cell research for CMT disease to be reported. Mario Saporta will present his research April 11 and more will be revealed!

2011-03-09T11:52:00.000-08:00

The only limits to our realization of tomorrow will be our doubts of today. Let us move forward with a strong and active faith.
-- Franklin D. Roosevelt

The Italian CMT Ascorbic Trials results follow all other results thus far, that unfortunately Ascorbic Acid has not proved beneficial to persons with Charcot Marie Tooth disease. But I'm holding out for hope in the uncertainty that the USA trials will offer more positive results. While we learn to live with the uncertainty of arrestment for CMT, we must trust – trusting that the support our friends and family will be there; that the money will come; that if one path does not work out, another one will open up.

Living by faith is our "invisible means of support." We believe everything will work out for the best. So we make the decision. Let go of the worry, the anxiety, and the doubt. We have faith in our connection to universal principles, for it is here that our true security lies. The Universe will not abandon us if we maintain our connection to it. Keep the faith, and the faith will keep you.

Warriors for the Cause

2011-03-04T11:29:00.000-08:00

Teens and young adults are stepping up and out as role models for others with CMT disease. Truly awesome to see what Sam, Alex and Desiree are doing (without 'chopper mothers') but because they have needs and news to share from composing music to fighting for ADA rights, to finding careers in the tech sector. They are in fact our leaders of the future. Not just survivors of disability, but warriors for the cause.

Alex, born in Russia, spent his first three years in an orphanage before adoption by a US couple who recognized his talent early and encourage him to continue. Sam in the UK, recognizing his abilities and limitations, has developed a successful tech career, while Desiree in the USA had to sue her high school to get a key to use the elevator to get to second floor classes.

Kudos to all!

And speaking of Russia, the first research in the Russian Federation of clinical cases of persons with Recessive CMT 4A has concluded using DNA genetic testing and mapped to mutations in the GDAP1 gene on chromosone 8, in Polish, German, Italian, Czech & Bulgarian CMT families.

Universality

2011-02-25T11:34:00.000-08:00

Our awesome responsibility to ourselves, to our children, and to the future is to create ourselves in the image of goodness, because the future depends on the nobility of our imaginings. --Barbara Grizzuti Harrison

The world we live in depends on the responsible contributions each of us makes. And this world is just as good as are the many talents we commit ourselves to developing and offering. None of us is without obligation to offer our best to our family, friends, or strangers, if our hope is to live in a good world. The world can only be as good as each of us makes it.

Individually and collectively our power to mold the outer circumstances of our lives is profound. Our personal responses to one another and our reactions to events that touch us combine with the actions of others to create a changed environment that affects us. No action, no thought goes unnoticed, unfelt, in this interdependent system of humanity. We share this universe. We are the force behind all that the universe offers.

Whether I acknowledge the depth of my contribution is irrelevant. It is still profound and making an impact every moment and eternally.

What's in your story?

2011-02-23T11:34:00.000-08:00

Our lives are like a story told one day at a time. Some of our story has been revealed; much remains. Yet life is not like a book in which you can skip ahead; life unfolds one day at a time. Keep on journaling.

Though it may be hard right now, let's not wish any of it away but live each day fully. We are the only ones who can write our story.

Teen with CMT sets Federal Precedence

2011-02-17T17:24:00.000-08:00

All Desiree wanted was a key and then she made legal history. A simple key to an elevator so she could attend classes on the 2nd floor. Simple, reasonable, and necessary due to Charcot Marie Tooth neuromuscular syndrome that does not allow her to walk up stairs. With the ADA Act in place, students with disabilities must have access to everything. And yet this straight A student had to fight the battle of her life during her senior year of high school. The good news is that she won her lawsuit against the school and finally received a key. Not only that, but Desiree's lawsuit sets a Federal legal precedence, that will surely help other student's needs for simple accessibility. Randy Page from CBS 11 pm news in Los Angeles reported the story February 16.

http://losangeles.cbslocal.com/video-news-on-demand/?clipId=5577872&flvUri=&par\
tnerclipid=&topVideoCatNo=193016&c=&

With her legal challenges over, Desiree can now spend more time on her artwork and sort through numerous university acceptance letters.

One Who Guides

2011-02-09T11:16:00.000-08:00

Thien Nguyen, assistant professor in the department of neurology at Johns Hopkins University School of Medicine in Baltimore, made headlines this week with a $420,000, two year grant for CMT research on Netrin-1. So what does this mean for us? The new funds will help support Nguyen's research into the breakdown of peripheral nerves (nervous tissue that connects the spinal cord with muscles and sensory organs) in Charcot-Marie-Tooth disease (CMT).

Netrins are a class of proteins involved in axon guidance. It is named after the Sanskrit word "netr", which means "one who guides”. A growing nerve axon will either move towards or away from a higher concentration of netrin. Netrins also act as growth factors, encouraging cell growth activities in target cells. Netrin-1 is a protein that is in us and encoded by the NTN1 gene. The function of this gene has not yet been defined; however, netrin is thought to be involved in axon guidance and cell migration during development. Mutations and loss of expression of netrin suggest that variation in netrin may be involved in the development CMT.

Axonal really refers to the makeup of the entire nerve in CMT. This is why people with CMT have such different phenotypes (expressions and symptoms) of the disease.

Nyguyen determined that genes for making myelin (the wrapping around the nerve (what we know as type 1) - also called "schwan cells" leads to mutant schwan cells that are telling the axons (nerves in general) to degenerate. In other words, a mutant has gone very wrong.

His lab has previously worked with MAG (myelin associated glycoprotein’s) which give stability and survival to the entire axon (nerve) They are a type of nerve-signaling to the nerve/muscle synapse.

Now with this grant, Nyguyen is working on Netrin-1, another nerve signaling molecule. Netrin-1 suggests control of it may be a potential way to target therapies for CMT. So far it has been all work with cell cultures in the laboratory. The next step is to test Netrin-1 in a mouse model.

Nyguyen’s theory is that harnessing Netrin may develop a neuroprotective therapy for all of CMT because results may be expanded into axonal degeneration even without demyelination. Great news for all with CMT!

Attitudes and Limitations

2011-02-05T11:12:00.000-08:00

Attitudes and Limitations

"My greatest limitations," a CMTUS member said, "are in my mind".

"Until I came to this group, I wasn't even aware that my negative attitudes in my CMT life were the direct result of my distorted attitudes".

"I brought myself a lot of unnecessary misery by thinking and thus created too much stress. I suffered more emotionally than physically. I listened too much to dire warnings and 'predictions' and was all wrapped up in the 'what ifs'. Talk about exhausting"!

"Once I joined this amazing network, I changed my attitude 100% and now have the dignity, resources, and responsibility to fulfill a more positive approach to living with CMT. I am no longer emotionally suffering. Nor do I spend time listening to others negative emotional issues. I know now I can find my own sources of comfort, joy, and peace no matter what, completely letting go of stress and CMT stress related symptoms. I feel so much better"!

Brainstorm!

2011-01-23T11:36:00.000-08:00

If we are to learn to manage Charcot Marie Tooth neuromuscular disease, we must begin focusing on solutions, not just on our problems.

First, this means we must change our attitude and outlook. We can no longer live as if there are only problems in our lives. We can no longer consider ourselves victims and hold on to the attitude that our life will never change. Nor can we continue to be consumed by self-pity. If so, we will fail to take responsibility for finding solutions. We will continue to live within what we have grown to know so well: our problems with chronic illness. But for every problem there is a solution.

Seek the solutions by becoming active in National Charcot Marie Tooth Awareness Month. It's not until September, but the planning has begun! A great way to focus on solutions is to get involved. How, you ask? Loose yourself in the cause! Plan an activity, prepare an event, write letters, speak out, join a support group and brainstorm ideas! From putting our heads together there's no limit to the good that will come!

Celebrate Uniqueness

2011-01-17T11:07:00.000-08:00

Today, celebrate who you are. Yes, you have much in common with other people. But you're also uniquely you.

Grab a piece of paper and something to write with. Now write down:

1. A lesson that you have learned in life.
2. A talent that you have, no matter how quirky.
3. Your favorite meal.
4. The name of a friend who respects and likes you for who you are.
5. An activity that you enjoy.

Now, pick up the phone and call your friend. Invite him or her to a celebration with you. Do the activity that you enjoy – go for a walk, go to a ballgame, sit at home and watch videos, whatever you like to do. Then prepare your favorite meal or go to a restaurant and have them prepare it. Show your friend your talent – remember this person likes and respects you for who you are. So if you can balance a ping pong ball on the tip of your nose, go ahead and do that. Show him or her how good you are. Talk to your friend about the lessons you have learned, and invite him or her to share a lesson learned from you.

Instead of fussing and worrying about how different you are, be grateful that you're unique.

Celebrate being you.

CMT DNA Repository

2011-01-15T16:12:00.000-08:00

The John P. Hussman Institute for Human Genetics at the University of Miami's School of Medicine is now the primary storage and analysis facility for the National Institutes of Health Rare Diseases Clinical Research Network on Inherited Neuropathies. This consortium includes 15 academic and clinical sites for exploring the natural history, epidemiology, diagnosis and treatment of Charcot Marie Tooth disease.

HIHG is making great strides in understanding the genetic causes of CMT. The Biorepository currently has 2000 samples and is developing faster ways of identifying genes, their protein changes, and the role they play in people who develop CMT. As more understanding in the way a gene's instruction code is changed, the hope is for treatment possibilities and most importantly prevention of symptoms.

New Year, Big Ideas!

2011-01-14T16:44:00.000-08:00

Lighting up the cold winter sky are fireworks for CMT disease! Announced last week, September 2011 will be The Awareness Month for Charcot Marie Tooth disease. Yes, that's right, an entire month focused on expansion of public health awareness for those that may need to know! Plans are being germinated now, with a series of celebrity wine tastings and a Fashion Week event ready to go! Letters have been written to Congresspersons and Governors to enlist their support. From the 2010 census, the estimated number of people having CMT disease in the USA is 145,110. This is a huge increase and clarifies the type of work that needs to be done. Researchers can't do the work alone, it takes you and me and everyone else to be advocates for those affected and life voices for those unaffected to hear!

It's a Wrap!

2010-12-30T11:08:00.000-08:00

As 2010 comes to an end, we are encouraged by the amount of extraordinary research that has been completed for Charcot Marie Tooth neuromuscular disease this year. We saw the refreshingly positive resurrection of NT-3 as a nerve growth factor, followed by initial reports on the use of Ascorbic Acid (both for CMT 1A), the highly successful work of high thoroughput screening of potential theraputic targets for CMT treatment, the enlightened work of the private, venture capital funded Phase II human trials project from the French biotech Pharnext, and the latest research from Italy on the walking bioenergetics, neuromechanics and physical activity in persons with Charcot-Marie-Tooth syndrome.

World genetic research and two additional Italian studies, one looking at the effect of recovery time after fatigue and another looking at the correlation between levels of daily living activity and neuromuscular function fire us with hope for the New Year 2011 and the possibility of arrestment of CMT once and for all.

Heart

2010-12-17T12:02:00.000-08:00

It is only with the heart that one can see rightly....
--Antoine de Saint Exupery

If we look at the world through suspicious or angry eyes, we'll find a world that mirrors our expectations -- a world where tension will mount, arguments will abound, strife will be present where none need be. However, our experiences in some manner bless us, and we'll recognize that if we look upon them with gratitude. Everything in our path is meant for our good and we'll see the good when our hearts act as the eyes for our minds.

When we see with our hearts, our responses to the turmoil around us, the fighting children, the traffic snarls, the angry lovers, will be soft acceptance. When our hearts guide the action we can accept those things we cannot change, and change those we can. And the heart, as the seat of all wisdom, will always know the difference.

Attitude Adjustment

2010-12-11T11:12:00.000-08:00

"I'm learning it's what I do with my today that counts," said one CMT Support Group Member. "I can make this a day to remember or a day to regret just by the kinds of thoughts I have about it.

"Let me explain what happened to make me realize this," he continued. "Two days ago, I woke up grumbling about my sorry lot in life. My divorce, my bills, having CMT disease, and a recent argument with a close friend haunted me. Throughout the whole day I nursed my woes and convinced myself that this was just another rotten day. And do you know what? That's exactly what it turned out to be! Nothing went right. I even had a second argument with another friend who called to cheer me up. A pity party indeed!

"Yesterday, I overheard someone say that a person is made or unmade by what he thinks. I thought about this for a while and decided to try it out today. Instead of greeting the day with my usual, 'Good God, morning!' I consciously said, 'Good morning, God!' with the expectation that it would be a good day. And that's what it's been. I even called my two friends to apologize for my previous terrible mood, and I had a warm and friendly conversation with them both!"

Update on Pharnext Pleodrug Trials for CMT

2010-12-05T16:20:00.000-08:00

How wonderful to hear more about the trials from Dr. Cohen this morning. Possibly in a year's time, we may know intermediate results. And a year later, 2012, the trials end with Ibsen Biopharmaceuticals continuing a drug delivery system. I am so excited by this!

Pharnax Pleodrug Trials for Charcot Marie Tooth disease Begin!

2010-12-03T11:54:00.000-08:00

Very exciting news for persons with Charcot Marie Tooth disease!

Pharnext SAS, a biopharmaceutical company specializing in the development of innovative treatments for severe neurological diseases and other major unmet medical needs, today announced that the French Agency for Healthcare Product Safety (AFSSAPS) has authorized a Phase II clinical trial with the first drug (a Pleodrug™) generated by the company's Pleotherapy™ technology platform in patients suffering from Charcot-Marie Tooth disease type 1A (CMT1A) - a chronic, severe, invalidating and currently incurable neuromuscular disease which affects 3 million people worldwide.

Pharnext's first Pleodrug™ is a composed of three generic drugs in a new formulation (a syrup) and which have already received marketing approval for therapeutic indications other than CMT1A. Given that the three compounds are present in the Pleodrug™ at 10- to 100-fold lower doses than in their usual indication, the clinical development programme in humans has not necessitated the performance of a Phase I safety trial and has enabled Pharnext to obtain a Phase II clinical trial authorization directly after just 3 years (rather than the 8 years required on average for most drugs).

The forthcoming Phase II randomized, comparative, placebo-controlled clinical trial will evaluate the safety, efficacy, pharmacodynamics and pharmacokinetics of PXT3003 in patients suffering from CMT1A. The trial will be performed in 5 investigating centres (Timone University Hospital in Marseilles, Salpêtrière Hospital in Paris, Limoges University Hospital, Lyons Sud University Hospital and Pierre Swynghedauw Hospital in Lille) and will be initiated first at Timone University Hospital (coordinating investigator: Shahram Attarian MD) in December.

"This first clinical trial authorization constitutes key proof of the efficiency of our Pleotherapy™ technology. We are continuing to screen for Pleodrugs™ for six other serious diseases (including Alzheimer's disease); our model means that we can hope to make Pleodrugs™ available to patient more rapidly", emphasized Pharnext founder and CEO Professor Daniel Cohen. "We are delighted to be able to start the first clinical trial of our first Pleodrug™ for the treatment of Charcot-Marie-Tooth disease", he concluded.

Pharnext has designed a novel, proprietary platform (Pleotherapy™) based on network pharmacology. The company's discovery engine identifies rational drug combinations (Pleodrugs™) made up of individual Pleocompounds™. This innovative approach could provide a solution to the ongoing and worrying decline in pharmaceutical pipeline productivity.

About Pharnext
Pharnext is a biopharmaceutical company focused on discovering, developing and licensing new pharmaceutical treatments based on intelligent Pleocompounds™ that form the basis of Pleodrugs™. Pharnext was founded in Paris, France in April, 2007, by Professor Daniel Cohen, MD, PhD, his research group (composed of pioneers in genome science and technology) and Philippe Pouletty, MD (General Partner at Truffle Capital). Thanks to Truffle Capital's founding investment, strong support from OSEO, a grant from the French Muscular Dystrophy Association (AFM) and the benefits of France's research tax credit scheme, Pharnext has developed a novel, proprietary platform (PleotherapyTM) based on network pharmacology and which may provide a solution for the current decline in pharmaceutical pipeline productivity. Pharnext is advised by La Compagnie Financière Edmond de Rothschild.

Read more: http://www.benzinga.com/press-releases/10/12/b665794/pharnext-receives-clinical-trial-authorization-for-a-phase-ii-study-wit#ixzz1752aeae1

Fill Up Your Life!

2010-11-29T09:56:00.000-08:00

One of the good things about the blues is their power to make me feel better. No matter how bad it gets in my little world, I can be pretty sure that B.B. King, John Lee Hooker, or Stevie Ray Vaughn has seen worse. Sometimes, it just feels good to vocalize all those bad feelings.

Bad things happen in life. Sometimes they are small annoyances; sometimes they are the major grief mongers. What matters is not what happens to us, but how we react to it. He left you. That is a fact. Now after you get done with the quart of rocky road that you are drowning your sorrows in, what are you going to do about it? You can sit around and complain to your friends about how unfair life is, or you can get up, put the empty bowl in the dishwasher, and go fill up your life.

Feelings are one of the blessings of being human. All of them. Sometimes we feel good; sometimes we feel bad. Take some time. Take some energy and be upset. Be aware of the feeling of being upset. But then get up, go out, and make positive use of your life. Fill it up!

Kindness

2010-11-27T10:41:00.000-08:00

Sometimes we feel lazy or bored, and then we don't do our best work. Perhaps we are daydreaming instead of listening closely to what a friend is trying to tell us. When we are not really paying attention to our activities or the people around us, we'll likely miss out on something important because we do receive in equal measure what we give. And this truth works in every aspect of our lives.

When we treat our friends, our families, even people we don't know well with kindness, we'll experience kindness in return. Our own actions and attitudes toward others are what we can expect from others as well.

Gratitude

2010-11-25T16:45:00.000-08:00

Sometimes in life, things happen too fast. We barely solve one problem when two new problems surface. We're feeling great in the morning, but we're submerged in misery by nightfall.

Every day we face interruptions, delays, changes, and challenges. We face personality conflicts and disappointments. Often when we're feeling overwhelmed, we can't see the lessons in these experiences.

One simple concept can get us through the most stressful of times. It's called gratitude. We learn to say thank you for these problems and feelings. Thank you for the way things are. I don't like this experience, but thank you anyway.

Force gratitude until it becomes habitual. Gratitude helps us stop trying to control outcomes. It is the key that unlocks positive energy in our life. It is the alchemy that turns problems into blessings, and the unexpected into gifts.

Just can't say enough about the power of gratitude each day.

Spiritual Growth

2010-11-24T12:29:00.000-08:00

There is no total answer.

Studying and reading are traditional methods of spiritual growth. With a lifelong routine of study each day, a person or couple grows under the guidance of the sages. Civilization exists because each generation builds upon the progress of the past. We do not have to reinvent the wheel.

After we learn from those who have gone before, we may even discover and create beyond the point where they left off. But if we are in a willful, defiant mood, we may say, "I have to find my own way. I don't feel like learning from anyone." Our individualism then becomes a half-truth, silently trapping us in problems that others have found answers to.

There is no total answer - no total freedom - only continued growth. Daily reading, openness to learn from others' encounters with life, and study of how they faced their most challenging spiritual questions will bring us progress.

Giving and Receiving Love

2010-11-21T15:50:00.000-08:00

Love involves a willingness to suffer and to be inconvenienced.
--Lewis F. Presnall

The act of loving another broadens our understanding of the human condition and often pinches our egos. Indeed, one of the greatest gifts, though not necessarily cherished, which is granted through loving another, is that we gain humility and thus healthier, smaller egos.

How often do we say the words, "I love you," and yet resent being detained by our loved ones? How frequently do we expect to get our own way when resolving a conflict? Is the silent treatment a manipulative ploy we commonly rely on when problem solving with a spouse or lover?

Love wears many faces and it means not always getting our own way, or never doubting the other's sincerity. We aren't guaranteed happiness forever after, even when we know we're loved. But what giving and receiving love does promise us is growth, periods of peacefulness, some poignantly painful times, and many chances to demonstrate that another's well being is a priority, which in turn assures us of our own well being.

Together

2010-11-19T10:29:00.000-08:00

Most of us have had a strong desire in our lives to "do it ourselves." We have had the idea that strength and independence meant we should not rely on or receive help from others. Now we are learning a far more mature and time-honored principle. We find strength to develop to our fullest as members of a community. Maybe we never learned how to ask for help. Perhaps we haven't learned yet how to accept it. It may still be difficult to express our gratitude for the help that brought us where we are today.

We receive many lessons about these things. If we are actively growing, we will get help from others and give it too. These gifts give us ample reasons and opportunities to express our gratitude. We are no longer loners. Now we have a network of friends who truly enjoy and enhance each other's strength.

Rainbows

2010-11-18T17:39:00.000-08:00

Birds sing after a storm. Why shouldn't we?
--Rose Kennedy

Some of us have been through an awful lot. We have endured pain and hopelessness. Now we have some choices to make. We can allow our pasts to make us feel bad about ourselves or we can sing after the storm. We can feel proud that we are not giving up, we are not willing to be destroyed.

The past won't change, and the bad things won't magically go away. But we can learn to move forward.

We can put the past where it belongs, close enough so we'll never forget, and far enough away so we don't give it all of our attention. The sun doesn't just make rainbows for other people; they're for us too.

Letting Go

2010-11-15T10:47:00.000-08:00

Some of us have an insatiable desire to do something about every situation that occurs in our lives. We fret about this, we rush into that, and we push our confused minds to the edge of despair. Weary from our relentless struggling, we become short-tempered, highly critical, and completely irrational. Little things become big things. Everything in our lives becomes too much for us.

When this happens, we need to "Let Go" of our false pride and admit that we alone cannot understand or solve our present difficulties. Only when we have the humility to admit our limitations can we receive the help we need.

Letting go of our false pride, however, is merely the first step. We also need to "Let God" take a hand in our affairs. When we give our burdens to God expecting God's help our problems often solve themselves without our ever making any conscious effort. Leaving our troubles with God frees our minds to receive new perspectives which we could not receive while we were busily clutching our sorrows and frustrations to us.

Time

2010-11-10T11:34:00.000-08:00

Time has a wonderful way of erasing bad feelings and leaving us with good ones. Our memories are selective, and fortunately, the pleasant ones seem to have more staying power. Whatever has been real and meaningful for us tends to remain with us - the rest gradually fades away. We can assist this selective process of memory by consciously letting go of the thoughts and feelings that disturb our serenity.

Imagine yourself making a package out of a disappointment, your hostility, some hurt feelings, or whatever is hampering your spirit. Wrap the package tightly and ship it out to sea. Or send it airmail to outer space.

Refusing to dwell on our wounds allows them to heal more quickly. For those who wish to live forward with Charcot Marie Tooth disease, there is no place for self-pity. The reprieve we have from our negative throughts is a daily one, and it depends on our spiritual condition. Gratitude for all the good fortune that comes our way keeps us emotionaly healthy.

2010-11-08T10:22:00.000-08:00

Happiness is not a matter of events; it depends upon the tides of the mind.
--Alice Meynell

It's all too easy to blame a friend, spouse, or co-worker for the uneven quality of our lives. If only others would behave according to our plans and dictates, then all would go well, we think. What seldom is remembered or even understood is that each of us has an individual perspective on any single event - our own. We need to stretch our minds and hearts to understand an experience from another's point of view. However, we need never fully understand how another perceives life. We need only to accept that another's perspective is legitimate.

Our happiness is not dependent on the perceptions or the actions of someone else. Nor is it dependent on attention, or lack of it, from a loved one. Our occupation may be challenging and fulfilling; however, the joy we get from it depends on the attitude we carry to the job. In every way, whether in the company of others or by ourselves, we make our own happiness.