MAY UPDATE

  
Jenn McNary, Jett Foundation Director of Outreach and Advocacy, presents at Tuesday's Congressional briefing 
with son Max.
Patient Advocates like Christine McSherry
and Jenn McNary are changing the way drug development happens in the U.S.. This has great hope, for not only those affected by Duchenne, but for the entire rare disease community. 

On Tuesday May 12th, Duchenne Advocates hosted a Congressional hearing and Duchenne update with Representative Bill Keating (MA) and Senator Elizabeth Warren (MA) on Capitol Hill. Special thanks to Dr. Eric Hoffman for educating Congress on Duchenne and the need for accelerated approval. 

Members of Congress from across the nation have been important allies in our efforts to win FDA approval for safe and effective treatments for Duchenne. We are at an important moment in that process and this briefing provided the latest information to our allies on Capitol Hill.

The briefing was informative and productive - but we still need your help. 

How can you help?

1. Please call your Senator's and Representative's office and urge them to support efforts to speed safe and effective treatments for Duchenne. Call or email Congress

2. 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:

The Race to Yes

 

3. Support our work with a donation.

 



Thank you for your continued support of the Jett Foundation. Read below for our exciting summer events and get registered for CAMP PROMISE!

And it's time for the JETT GOLF CLASSIC - sign up today!

Best, 
christine signature
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation
HELP FUND FILM ABOUT DUCHENNE, FAMILIES AND SURVIVAL

From producers of Oscar and Emmy-winning films: A documentary about families doing the extraordinary -fighting to save their sons' lives. 

Watch the trailer. 
CAN YOU DO IT? JettRide 2015
50 Miles - 1 Day
Saturday, August 1, 2015
Gorham, NH to Lincoln, NH

This summer the JettRide is a half-century bike ride from Gorham, NH  to Loon Mountain, NH.  The event helps the friends and family of boys with Duchenne come together and raise needed funds for research and clinical trials.  The 2015 bike ride will be in loving memory of 4 dearly missed Jett Foundation friends:  Quinlan J. Sullivan III, Thomas P. Coyne, Clari De La Cruz and John Dawson. 

LEARN MORE AND JOIN US FOR THE HALF CENTURY RIDE 
SIGN UP FOR CAMP! 

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


Click to register and learn more
CALLING ALL FOURSOMES TO THE JETT GOLF CLASSIC
Don't miss the Jett Foundation's 13th Annual Jett Golf Classic at the Pinehills 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. 
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