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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.
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.
Best,
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation
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Challenge Grant - Donate Today!
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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.
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Jett Golf Classic - June 1, 2016
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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
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Jett Foundation Regional Roundtables
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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
"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
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Get Involved! Join a Jett Team!
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 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?
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 July 31, 2016
Marshfield/Duxbury
Triathlon
Registration is now open -
join our team
of men and women "TRI-ing" to end Duchenne.
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 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.
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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).
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Concert to Benefit Jett Foundation
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 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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