Tag Archives: Genetic disorder

3rd Annual CYCLE 4 CMT

Posted on July 29, 2016 by cmtny

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 →

2013 RARE Champion of Hope Community Nominated Awards

Posted on May 3, 2013 by cmtny

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 Awards, Charcot-Marie-Tooth, CMT, CMTA, Conditions and Diseases, Disease, Genetic disorder, Global Genes Project, Health, Nominate, Nutrition and Metabolism Disorders, Rare disease, United States | Leave a comment

A Race For The Brace by guest blogger Amy

Posted on March 8, 2013 by cmtny

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 Charcot-Marie-Tooth, Charcot-Marie-Tooth disease, CMT, Genetic disorder, Helios, Kevlar, leg braces, neuromuscular disorder, Orthotics, Peripheral neuropathy, Rare disease | 6 Comments

Royal Pains gives me a royal pain

Posted on September 8, 2012 by cmtny

Mom almost fainted and I nearly fell off the couch, when watching a recent episode of USA Network’s Royal Pains, a comedy television series about a concierge doctor-on- demand working in the Hamptons. When attempting to diagnose Divya’s new boyfriend’s arm numbness and paralysis, Dr. Jeremiah said he may have CMT, “which is almost always fatal.” That’s NOT true. Continue reading →