We're just three short weeks away from the critical FDA advisory committee meeting to evaluate eteplirsen on
April 25th. This is a critical milestone for boys with Duchenne. Our community is coming together to ensure that the committee gets a full understanding of the science behind this safe and effective treatment. We need a roomful of people to support this effort and watch history unfold that day!
Last month 109 Congressmen signed a letter urging the FDA to "utilize all available tools, resources, and authorities" in reviewing a treatment for Duchenne muscular dystrophy. Today we are seeking Senators to do the same. Please
contact your senator and urge them to sign this letter and garner as much support as possible leading up to AdComm.
If you haven't reserved your seat, there's still one available for you. Jett Foundation is providing travel and hotel scholarships to ensure our entire community is represented and heard.
Three important requests:
- Would you please watch and share this simple 25 second video summarizing the results of the 4 year-long study of boys on eteplirsen?
- Please encourage your Senator to sign this letter in support of the Duchenne community. Together, with our allies on the hill, we will #makeduchennehistory.
- Come to AdComm! The Jett Foundation is providing travel and hotel scholarships to ensure our vibrant and strong community is represented and heard. Reserve your seat today!
Our Regional 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. Also,
Camp Promise registration is OPEN!
Best,
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation
|