We are so proud of the 109 Congressional Representatives who are standing with the Duchenne community! Read the letter here
that was sent to Dr. Janet Woodcock at FDA urging the agency to "utilize all available tools, resources, and authorities" in reviewing a treatment for Duchenne muscular dystrophy and read our blog about it here.
While we are still waiting to hear from FDA when Sarepta's Ad Comm will be, we are steadfast in our objective to support the review of eteplirsen under accelerated approval. We are still asking that FDA - finally - do the right thing and say "yes" to this treatment, and do it now. We can't afford to wait a day longer than we have to. It's already been too long.
As we wait, we are busy working. We are making our story know in the media - things like this Boston Business Journal story
and this radio program
from Our American Network. We are proud to be part of the rare disease community and part of the movie, Rare in Common
, that premiered on on Feb. 29th.
Our Roundtables continue to be a great success bringing together families, caregivers and industry to create more understanding. Don't miss the next one in Colorado
on April 30th.
And mark your calendar - good stuff coming up!
Monday, March 7th - Cooking for a Cause in Boston
Tuesday, March 22nd
is hosting an information session at our office in Kingston, for more information email Michelle
Wednesday, June 1st - Save the day for a great day of golf at the Jett Classic!
Thank you to everyone for your support.
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation