Blogs I Follow
CMTA research – The Time Is Now!
Tag Archives: Charcot-Marie-Tooth
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
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
I will not stop traveling, nor will I avoid places with stairs. I will not stop walking, until I can no longer take another step. So, we need to find a drug to stop CMT leg cramps and muscle spasms. We need to find a drug to stop the progression for the millions of children, who have lost the normal function of their legs and arms. Many more people suffer from CMT than from MS, ALS and many other diseases that everyone knows about. That’s why CMT Awareness Month is so important, to help those, who have been misdiagnosed, or like myself, go undiagnosed for years wondering what’s wrong with them. Continue reading
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
NEW ART INSTALLED at Art de Cure Gallery for CMT at the Christine A. Hook Gallery at CPO for Charcot-Marie-Tooth (CMT) neurodegnerative disorder, for our next show,“MULTIPLICITY,” which runs from JANUARY 10, 2014 through JUNE 13, 2014. Continue reading
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
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.
Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!
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