Tag Archives: nerve disorder

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

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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

SAVE-THE-DATE-December-5, 2013-Starry-Night-For-CMT

New Art show installed at the Art de Cure gallery for CMT at CPO (Clinical Prosthetics+Orthotics) benefitting the Charcot-Marie-Tooth Association

NOW SHOWING: “Gracelines”

DATES: JUNE 14, 2013 – JANUARY 10, 2014

Starry Night for CMT Reception and Dedication of gallery in memoriam for Christine A. Hook on December 5, 2013 Thursday from 4-7 PM. Featuring Silent Auction of Original art work, jewelry, gift baskets, gift cards and complimentary light fare.

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Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!

Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!
http://www.congressweb.com
The FDA recently issued a draft guidance on the Expedited Approval Programs which they say fulfills the FDASIA mandate on Accelerated Approval for Rare Diseases, however the guidance does not address specific issues related to rare disease drug development as required by FDASIA. This is unacceptable! Continue reading

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Meet fellow CMT blogger, Ashley Pomykala

Meet The Blogger Behind Parsimonious Pash Interview by Melinda Lang How did you decide to become a blogger? Honestly this is probably one of the toughest questions you could ask.  I tried my way with a couple of blogs before … Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories | 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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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 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