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CMTA research – The Time Is Now!
Tag Archives: Rare disease
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
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
September, CMT Awareness Month is fast approaching. What will you do to spread awareness. There are many ways that we can all help ourselves, by increasing awareness of our rare condition. Something as simple as changing your Facebook photo to the new CMT ribbon: 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The FDA recently issued a draft guidance on the Expedited Approval Programs which they say fulfills the FDASIA mandate on Accelerated Approval for Rare Diseases, however the guidance does not address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
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
Under the Budget Control Act of 2011, federal programs face an across-the-board funding cut of nearly 8 percent in January 2013, if Congress hasn’t reached agreement on a budget deficit reduction plan. Continue reading
This will only take a few minutes to get your voice heard! Today, February 29, 2012, is Rare Disease Day. I just took action to raise awareness in the United States about people with rare diseases! Please take a few … Continue reading