Tag Archives: CMTA

What’s Wrong With Me?

I recently learned, after my Aunt let it slip, that my parents knew there was something “wrong” with me, when I was an infant. Even though my father was not a fan of doctors, they had me examined, hoping for an answer. Continue reading

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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

September 2013 is CMT Awareness Month! What Will You Do to Spread Awareness?

September, CMT Awareness Month is fast approaching. What will you do to spread awareness. There are many ways that we can all help ourselves, by increasing awareness of our rare condition. Something as simple as changing your Facebook photo to the new CMT ribbon: Continue reading

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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

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We have all lost a wonderful amazing friend.

Hold Your Loved Ones Close

Time speeds by, sometimes in a flash. Before you know it the years have passed; the children you’ve held in your arms are cradling you now, in theirs…roles are reversed, and there is never enough time. Never, EVER enough time. By Christine A. Hook Continue reading

Posted in art, Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , | Leave a comment

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

PROFILES IN CMT Interview with Amy Gander

Amy’s mother worried something was wrong with her when she was just 3 years old. “My mother said I began throwing my right leg out when I was 3. My right leg would go out from under me, and my gait was off,” said Amy. Continue reading

Posted in AFO, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, leg braces, Neurologist, neuromuscular disease, neurotoxic drugs, peripheral neuropathy, personal stories, physical therapist | Tagged , , , , , , , , , , , , | 4 Comments

Vote to Win a Share of $5 Million for CMT (Charcot-Marie-Tooth) disease

  The CMTA Needs Your Vote to Win a Share of $­5 Million Written by CMTA We need your vote to win a share of a $5 million grant from Chase Community Giving program. it only takes a second to … Continue reading

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