Tag Archives: Health

3rd Annual CYCLE 4 CMT

My good friend, Amy, has convinced me to get back on a bike again by joining her in participating in the 3rd annual CYCLE 4 CMT on August 28. Last year, I went to this event to support Amy, raise some money for CMT, and enjoy the party. Continue reading

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Posted in Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, fundraiser, Fundraising, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , , , , , , , | Leave a comment

CMT Awareness Month Challenge

We’ve all seen the ALS Awareness Bucket Campaign and how ALS successfully raised over $109 million, well now comes the CMT Awareness Challenge. I’ve been nominated for this challenge to write 3 things that I am grateful for relating to CMT, over the next 5 days.
I believe the point is to help people understand what it’s like to have CMT, and let them know where they can donate to find a treatment to stop the progression. Continue reading

Posted in AFO, ALS, Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories, phrenic nerve | Tagged , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

2013 RARE Champion of Hope Community Nominated Awards

The Tribute to Champions of Hope Gala is being held in Newport Beach, CA on September 21st and the Global Genes Project is looking for RARE Champions to be recognized for four special awards nominated by you! Nominations are being accepted April 1st through May 15th. Continue reading

Posted in Charcot-Marie-Tooth disease, Global Genes Project, Health CMT, neuromuscular disease, peripheral neuropathy, RARE Champion of Hope Community Awards, Rare disease day | Tagged , , , , , , , , , , , , | Leave a comment

Preclinical drug trial for CMT1A

ADX71441 has shown efficacy in multiple preclinical models including: CMT1A, Addex is also advancing several preclinical programs including: GABA-BR positive allosteric modulator (PAM) for Charcot-Marie-Tooth (type 1a) disease, spasticity in patients with multiple sclerosis (MS), pain, overactive bladder and other disorders. Continue reading

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Overcoming Depression and Living With Charcot Marie Tooth Disease

Studies show that people who suffer from debilitating diseases tend to have a higher risk of depression. It can be a struggle getting up every day when you have a major medical condition. Despite what the name would seem to indicate, Charcot-Marie-Tooth disease is not a disease of the teeth, but rather a very serious nerve disorder that can make leading a normal life difficult. People who suffer from CMT experience a progressive weakness in the extremities due to a weakening of the nerves. Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, Health CMT, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , , , , , | 3 Comments

Spreading Awareness One Person at a Time

At the CMTA support group leader conference in Chicago, a speaker encouraged us to tell at least one person each day about Charcot-Marie-Tooth (CMT) disorder. Thereby, spreading awareness of this disease, which affects an estimated 5 million people worldwide, and yet most have never heard of. Today, while getting an ultrasound of my spleen, four more people learned about CMT. Continue reading

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Our big event is almost here.

A lot of time and effort went into planning and preparing for Starry Night for CMT. Last year, for our first Art de Cure fundraiser, we raised $10,000 for the CMTA. We Hope to match that amount again this year. Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, fundraiser, Neurologist, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , , | 2 Comments

Do you start your day by falling on your face?

How do you start your day? I begin most days by getting out of bed, taking a few steps and falling splat on my face. Then I crawl over to the dresser and struggle to pull myself up off the floor with my weakened, muscle wasted arms.
After 47 years of wondering what’s wrong with me- why do I keep tripping over my own feet and spraining my ankles? Why can’t I get up out of a chair without my husband grabbing me by my belt loop to pull me up? Why do I need to crawl up the stairs if there’s no hand rails? Why am I getting worse? Finally I have a diagnosis. I have CMT or Charcot-Marie-Tooth disease. Continue reading

Posted in AFO, Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, human clinical trials, leg braces, Neurologist, neuromuscular disease, neurotoxic drugs, peripheral neuropathy, personal stories, physical therapist, STAR, stem cell research | Tagged , , , , , , , , , , | 2 Comments

Profiles in CMT: Interview with Christine A. Hook

Christine A. Hook’s Interview with Melinda Lang

You recently received an award from the CMTA, tell us about your award and how you were nominated.

Yes, I recently received the National ‘I am a STAR’ award, for everything I have tried to do to raise awareness of CMT, and money for research…through the CMT blog, Grace Lines, I write, and the Art de Cure gallery I co-coordinate, which benefits the CMTA. My parents nominated me for the award, and I’m still shocked that the CMTA chose me. It’s a great honor! Continue reading

Posted in Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories, STAR | Tagged , , , , , , , | 6 Comments

Why Making Healthy Lifestyle Choices Can Help Reduce Hearing Loss

Hearing loss sometimes may seem inevitable, especially as we age. For example, according to the National Institute on Deafness and Other Communication Disorders, about 17 million adults in the United States report some form of hearing loss and almost 50 percent of adults ages 75 or older have hearing loss. Continue reading

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