APRIL UPDATE
Greetings!
  
Last week, we received unexpected news that CEO of Sarpeta, Chris Garabedian stepped down and was replaced by Chief Medical Officer, Dr. Ed Kaye. 

 

Chris was a fierce advocate for the Duchenne community. He set an aggressive vision to get exon skipping to those with Duchenne. We are grateful for his work, his passion and his efforts to create a new treatment option for our children. 

 

It is our expectation that Dr. Kaye, the Sarepta leadership team and regulatory officials will continue with an aggressive approach and move forward together to follow the most responsible course for all stakeholders, most importantly our boys. Efforts to continue progress and make the best choices to finish what Chris started will occur as we all push for the finish line and ensure that this mission is accomplished. 

 

The most important thing is our boys and getting them access to drugs and providing a pathway to market for other drugs.  

 

How can you help?

 

1. Share the truth: Here are 3 big Reasons we need the FDA to ACT NOW to save a generation of boys with Duchenne. Join us in telling the FDA to get back on track in the fight to make Duchenne history. See and share here:

http://theracetoyes.org/.../one-year-later-an-important-info.../

 

2. Support our work with a donation:

 

Today Counts.

3. Read more here and share what you learn:

In good news, the FDA has granted orphan drug status to Catabasis, a Cambridge, MA biotech startup, that is currently advancing treatments to address Duchenne. Clinical trial phases 1 and 2 are expected to begin by the end of 2015. A former Phase 1 trial confirmed that the drug is well-tolerated, and is able to increase muscle regeneration and reduce inflammation. Learn more here.

 

Read below for our exciting summer events and get registered for Camp Promise!

Thank you for your help and support, 
christine signature
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation
MCSHERRY HONORED FOR ADVOCACY WORK
The Jett Foundation and Christine McSherry were honored for the work accomplished in the Duchenne community. 

A huge thank you to Rob Capalongo and Micheal's Cause for their success funding critical research. All agree the best award will be when a treatment is available for those with Duchenne. 
CALLING ALL FOURSOMES TO THE JETT GOLF CLASSIC
Registration is now open! 

Don't miss the Jett Foundation's 13th Annual Jett Golf Classic at the Pinehills premier courses in Plymouth, MA on Wednesday, June 3rd. Join 200 other Jett Foundation friends for a day of golf, great food and fun all to benefit the Duchenne community. 

SUMMER IS ON THE WAY
It's Triathlon time! 
Join a Triathlon team and support the Jett Foundation

Learn about the Gals for Cal and participate in the Women only Title 9 Hopkington Tri on September 13th. 

Learn about the Tri for Jett team taking on the Duxbury-Marshfield Triathlon on August 2nd. 
Become a camper!

It's time to register for Camp Promise. Don't miss these important application deadlines!


Click here to get signed up
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