JULY UPDATE

 

 

Your donation is making a difference.

 

Senator Ed Markey (D-MA) and Christine McSherry met last week to further progress to speed drug approval. 
Advocacy efforts and dollars raised are changing the way regulators approve and evaluate drugs, and this is changing history. I am looking forward to the day when it's possible to say that you can live with Duchenne. That day is coming. Let's make it happen as soon as we can, and please know that your donation is fueling this amazing progress. Thank you.
 

There are currently more drugs in the pipeline for Duchenne then ever before. This is a direct result of our community's advocacy work, building awareness and your support. Congratulations to Sarepta on the timely filing of their New Drug Application for eteplirsen. Akashi Therapuetics reported positive results for their compound HT 100; Catabasis Pharmaceuticals received FastTrack designation for their Duchenne drug; and the FDA announced it accepted Biomarin's NDA for drisapersen, another exon skipping therapy for treating Duchenne. This is all good news and we remain optimistic, but we also need to remain vigilant.

 

Many thanks to our Massachusetts Congressional Delegation, especially Senator Ed Markey, Senator Elizabeth Warren, Congressman Bill Keating, all of their staffs, and the HELP Committee staff for their attention and support. They are advocating for us and we are grateful for their time and engagement to help get faster access to drugs for those who need them. 

 
Lastly, read below for what we have going on this summer - from Roundtables on Clinical Trials to the one day New Hampshire JettRide, to Gals for Cal and Tri for Jett, we'd love to have you involved!

Best, 
christine signature
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation
LEARN MORE ABOUT CLINICAL TRIALS
Do you want to learn more about clinical trials?
We can help. Join one of our roundtable discussions. 
 

Currently, there are approximately 62 ongoing clinical trials for Duchenne listed on clinical trials.gov. Several pharmaceutical companies have therapeutics in the approval process with possible approvals for at least 3 drugs in 2016. It is an exciting time for Duchenne, but it can also be confusing for those who have to make important decisions for their loved ones.

 

The Jett Foundation is partnering with other Duchenne Alliance members as well as clinicians and other experts around the United States in a series of Regional Roundtable clinical trial discussions. These events will help to inform and create discussion around clinical trial options both locally and worldwide currently underway or recently completed. 

Saturday, August 8th in Dublin, Ohio  Register here. 
Saturday, August 22nd at UCLA in Los Angeles, CA
Saturday, September 12th in Pittsburgh, PA
More locations to be determined. 
Learn more - email Jennmc@jettfoundation.org
CAMP PROMISE IS IN FULL SWING
15 HAPPY CAMPERS IN COLORADO

 

Last week Camp Promise Rockies hosted 15 campers and 17 volunteers for an outstanding week of  summer fun. See all the photos here! 


 

Camp Promise East is next week and Camp Promise West is the last week in August. 

 

A HUGE thank you to all our supporters for giving the gift of summer fun! Camp is free thanks to our generous donors.


 

Give the gift of camp! Make a donation. 

 


 


 


 

 


 


 

 

TRI FOR JETT KICKOFF PARTY 
Many thanks to all who made the Tri for Jett Kickoff party a success! 

Thank you to our fabulous sponsors for the event, Ralph's Wine and Spirits, Fire it Up Flatbread and our lead team sponsor, the Goodale Company.  



Read about it in the Boston Globe or learn more about the team.
New England Patriots Training Camp
Watch out here we come!

Thank you to the Pats for hosting the Jett Foundation again this summer at Training Camp! We are grateful for this opportunity for those with Duchenne and their families to enjoy an amazing day of football. 


JOIN A TRIATHLON TEAM!

Participate in the Women-only Title 9 Hopkinton Triathon 

TRI FOR JETT 
August 2nd 
Take on the Duxbury-Marshfield Triathlon with the co-ed Tri for Jett team. 
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 
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