Tag Archives: Charcot-Marie-Tooth disease

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

Disney Ticket Raffle for Charcot-Marie-Tooth disease!

In conjunction with the Starry Night benefit for CMT in Albany, NY, you can once again try your luck on our raffle for four one-day Park Hopper® tickets for use at the Magic Kingdom®, Epcot®, Disney’s Hollywood Studios™ and Disney’s Animal Kingdom® Park Florida. (valued at $496)
http://www.cmtausa.org/url/disneyraffle Continue reading

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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.

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

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

A Race For The Brace by guest blogger Amy

As a child I always knew I was different, but never really knew anything was wrong. I was always the last one picked in gym class, could never run a mile in the amount of time that is required to even pass gym. To this day I am sure that the teacher “fudged” my time just to get me out. Continue reading

Posted in AFO, Charcot-Marie-Tooth disease, CMT, CMTA, fundraiser, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , , | 6 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