May Update


During the April 25th Advisory Committee Meeting (AdComm), we made Duchenne history by changing forever the way patient input is considered by the FDA and the drug development world.

For the first time ever, quantified patient reported outcomes (PRO) were presented during an AdComm meeting by Jett Foundation during donated sponsor time. We hope that these PRO's, as well as the patient and Duchenne expert testimony are taken into consideration by the FDA before they make their final decision by the May 26th PDUFA deadline.

It is important to remember that under FDASIA, the FDA is required to consider our views when it makes a decision on eteplirsen.  The independent AdComm panel, however, is not.
Our message to the FDA is the same: As long as the world-renowned Duchenne researchers and clinicians support eteplirsen's data, the Duchenne Community will push for approval.

How can you help?  Please continue to read below about all the programs, fundraisers and events we are running to support our community! 

Thank you to everyone for your support. 

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

Challenge Grant - Donate Today!
Jett Foundation spent an incredible amount of time, effort and resources to ensure the entire Duchenne community was represented and heard at the AdComm meeting.  We provided:
  • hundreds of travel scholarships to families who would not have been able to come otherwise
  • 155 children experienced the magic of Camp Promise
    while parents were viewing the meeting.  Click here to see priceless pictures of camp.
 If you joined us in person, remotely via webcast, or just simply believe in the work we are doing - please consider pledging your support to continue our community's efforts to #makeduchennehistory.

Jett Golf Classic - June 1, 2016
  Registration is open! Sign up today for our largest fundraiser of the year!
14th Annual Jett Golf Classic
Wednesday June 1st, Registration 10am
Pinehills Golf Club, Plymouth, MA  

Sign up by May 12th and get a 2:1 practice round!

Please consider joining our generous team of sponsors.
Jett Foundation Regional Roundtables

More than 25 community members and industry partners joined the Jett Foundation on Saturday in Denver, Colorado for our Regional Roundtable program.  A special t hanks to Lauren Morganroth for her continued support of the roundtables with her "genetics and more" presentation to kick off the days discussions.  Our next Roundtable is Saturday June 18th
in Dublin, OH
"We just want to thank the companies for coming here to meet with us, we are a small group but it is so appreciated that you make the time for us."
                              Ginny Ward, Mom

Get Involved!  Join a Jett Team!
jettride 2010 logo July22-30th
Teens (14-18)from across America will make a three state (MA,NY,VT) tour this summer to help raise funds and awareness for Duchenne.  Do you know a teen looking for a life changing/saving experience? 
July 31, 2016
Registration is now open - join our team
of men and women "TRI-ing" to end Duchenne.

Gals for Cal,
Title 9 Triathlon
Sept. 11th Hopkinton, MA

Join this amazing team of women who are swimming, biking and running for Duchenne.  Join our team today! Visit our website for more info.

Industry Partner News
The Jett Foundation is thrilled to work with so many industry partners who are working towards treatments for Duchenne.  Read more about their recent updates:
Santhera Pharmaceuticals announces that it has submitted comprehensive briefing material and a meeting request to the FDA to discuss the filing of a New Drug Application (NDA) for Raxone® (idebenone) for the treatment of DMD patients not taking concomitant glucocorticoids.
Marathon Pharmaceuticals announced that it is expanding patient access to deflazacort, its investigational medicine for Duchenne Muscular Dystrophy (DMD)
Catabasis Pharmaceuticals has announced positive biomarker data from Part A of the trial, and initiation of dosing for the first patient for Part B (Phase 2).
Concert to Benefit Jett Foundation
Join us May 13th Torrington, CT ! Buy your tickets today! 
Belle of the Fall will be releasing their debut album, "Earthbound", at the Warner Theatre. T his event will be raising much needed funds and awareness for the Jett foundati on and honoring two Torrington hero's, Jacob and Liam Kelly.  
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