April Update


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: 
  1. Would you please watch and share this simple 25 second video summarizing the results of the 4 year-long study of boys on eteplirsen?
  2. Please encourage your Senator to sign this letter in support of the Duchenne community.  Together, with our allies on the hill, we will #makeduchennehistory.
  3. 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!
Jett Foundation raises critical funds to support our mission through fundraisers and events.   Please read more below about how you can get involved and support Jett Foundation through these events: 14th Annual Jett Golf Classic, Jett Ride, Gals for Cal and Tri for Jett.

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!

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Christine McSherry, Jett's Mom
Executive Director, Jett Foundation

14th Annual Jett Golf Classic
Wed. June 1, 2016  - Register today!

Golf 2013      
Calling all Foursomes!  Come to the 14th Annual Jett Golf Classic!
Wednesday June 1, 2016
at the Pinehills in Plymouth. 
Register today!

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 To become a sponsor email Maura
Camp Promise Registration is OPEN

Looking for a fun and accessible camp for your son this summer? Join us at Camp Promise, our free and accessible overnight camp with locations in Connecticut, Colorado, and Washington. 
Campers and volunteers can start their application TODAY at www.camppromise.org/appl
Camp Promise - East (CT): July 4th - 9th
Camp Promise - Rockies (CO): July 25th - 29th
Camp Promise - West (WA): August 22nd - 27th
Get Involved!  Join a Jett Team!
Teens (14-18)from across America will make a three state (MA,NY, VT) this summer to help raise funds and awareness for Duchenne.  Do you know a teen looking for a life changing/saving experience?  Email Michelle for more info
July 31, 2016
Registration is now open - join our team of men and women "TRI-ing" to end Duchenne.

Gals for Cal Tri, Sept. 11th Hopkinton, MA

Join this amazing team of women who are swimming, biking and running for Duchenne.  Join our team today! Email Cindy for more information.
Roundtables success continues - educating families and caregivers
Thanks to all who attended the Houston Roundtable. Many thanks to  our company participants and sponsors and especially Dr. James Poysky for the session on learning and behavior. Here are the slides from his presentation.
"We are seeing a total ripple affect from these great information sessions. Folks are taking the information they learn, and are discussing and sharing it on social media like Facebook. Families who aren't able to attend, are still able to learn important information about clinical trials and Duchenne research. The roundtables are having even more impact then we ever imagined."
-Christine Mcsherry, Jett Foundation
Many thanks to our sponsors and partners.  If you're interested in helping make an impact with these informative meetings, contact  Maura  
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