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CMTA research – The Time Is Now!
Tag Archives: Neuromuscular disease
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
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The FDA recently issued a draft guidance on the Expedited Approval Programs which they say fulfills the FDASIA mandate on Accelerated Approval for Rare Diseases, however the guidance does not address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
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
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
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
After months of writing letters, sending emails and visiting with NY state and local representatives, we now have received the City of Albany, NY Office of the Mayor, Gerald Jennings, Proclamation encouraging residents to join in observance of Charcot-Marie-Tooth Neuromuscular … Continue reading