Tag Archives: Neurological disorder

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

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

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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Flying Porta-Potties

Throughout my life I have found that I’ve wasted way too much time worrying about a lot of things that never happen. Now it seems that what I should have been worrying about, is getting done in by a flying Porta Potty. Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, flying Porta-Potty, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories | 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

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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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

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

Collaboration May Help Uncover Treatments for Rare Neurologic Disease

A research collaboration including scientists from the NIH’s National Center for Advancing Translational Sciences (NCATS) and the University of Wisconsin–Madison, helped identify three promising molecular compounds from a collection of approved drugs to pursue as potential treatments for Charcot-Marie-Tooth disease (CMT), a genetic neurological disease for which there are no current treatments. Continue reading

Posted in Charcot-Marie-Tooth disease, CMTA, Health CMT, human clinical trials, neuromuscular disease, peripheral neuropathy, stem cell research | Tagged , , , , , , , | 2 Comments