June 2016 Update

 
 

During the first half of 2016, Jett Foundation and the Duchenne community have made tremendous progress in improving the lives of those affected by Duchenne. 
  • In March, we partnered with our friends at Yale Appliance and Massachusetts restaurants to host Cooking for a Cause. 
While we still eagerly await FDA's final decision on eteplirsen, Jett Foundation will continue to work to expedite the development and approval of candidate therapies until every child born with Duchenne has access to a safe and effective treatment. 

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



Camp Promise Sailing 
Jett Foundation is excited to be partnering with Piers Park in East Boston for our upcoming Adaptive Sailing Camp  to provide youth and young adults with Duchenne a free, fun, hands-on sailing exp erience. 
 
For more information, please email libby@jettfoundation.org
 
Our 14th Jett Golf Classic was a Success! 
Thank you to all who joined us on June 1st.  It was a beautiful day at the Pinehills, together we raised $100,000!

Here is a link to photos from
this great dayof golf!
Thank you 2016 Jett Golf Sponsors!  

    
Jett Foundation Regional Roundtables

Our Regional Roundtables continue to be a great a resource to families and caregivers.
This month we are partnering with Little Hercules Foundation and coming to Dublin, OH on June 18th.   Here are what parents have to say about this program:

 "I recommend anyone who is in the surrounding area to attend this!! This is so informative and personal! It's more knowledge about drugs and trials! And it's free!! Excellent source of info. Go!!!" 
 

Click here for more info
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
Marshfield/Duxbury 
Triathlon
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 collaborate with so many industry partners who are working towards potential treatments for Duchenne.  Read more about their recent updates:
Sarepta Therapeutics  announced that it plans to provide FDA with new dystrophin  data from the PROMOVI study over the next few weeks to facilitate the agency's review of eteplirsen's New Drug Application (NDA). This news comes after the announcement that FDA would be unable to come to a decision on eteplirsen's NDA by the May 26, 2016 Prescription Drug User Fee (PDUFA) deadline. If you have any questions about Sarepta's Duchenne programs, please contact Sarepta's patient advocacy manger Kara Boniface, (kboniface@sarepta.com). 
BioMarin Pharmaceuticals announced that it is withdrawing it's Marketing Authorization Application (MAA) in Europe for Kyndrisa (drisapersen) and intends to discontinue all clinical and  regulatory development of Kyndrisa as well as the three other first-generation follow-on products in phase 2 studies. If you have any questions for BioMarin please contact BioMarin's patient advocacy team (patientadvocacy@bmrn.com).

Thank you to Belle of the Fall and the Kelly Family
Belle of the Fall Benefit Concert  
 
A huge thank you to Jacob and Liam, and their parents John and Mel for hosting the Bell of the Fall Benefit Concert to raise funds and awareness for Jett Foundation and for Duchenne. 

Jett Foundation exists to support kids like you, thank you for all of your help in raising awareness!
 

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