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                   September Update
                      


Greetings! 

 

Over the past 2 years, the Jett Foundation has been focused on getting access to safe and effective therapeutics as quickly as possible. Our work has improved the way patient advocates and communities work with regulators and industry partners. We are seeing the positive effects of these efforts. 

 

We started with a thread of hope and it is becoming a rope. We are making incredible advances and have played a major role in helping speed the process of drugs to market by creating a more open and active dialogue with the FDA and a more robust and inclusive process when it comes to expediting research and finding cures.


When we started this foundation, I was focused on immediate concerns ahead, like keeping Jett on his feet and walking. I wasn't thinking then of college, but last week, he started as a freshman at Bridgewater State. Getting him settled was a logistical feat, but he is there and it brings me hope that more and more of those with Duchenne will be going to college. My thread of hope grows thicker. 

The advancement for access to life-saving therapies is in action and is also a part of the growing rope of hope. There are options on the horizon that are preserving muscle function and we have growing optimism that there will be a rope strong enough to help all those effected by Duchenne.

Please join with me this fall to support the critical advocacy work and programs of the Jett Foundation. Together lets make sure to hold onto our rope and continue the much-needed advocacy work so that ALL with Duchenne can live full lives. 

 

Best, 

christine signature  

Duchenne Mother Meets with FDA (10-12) Times

Members of the Jett Foundation team brought their expertise to Global Genes' RARE Patient Advocacy Summit in Huntington Beach, CA. The team was grateful to be part of the informative summit focusing on how patient advocates are playing a critical role in drug development and the challenges of rare disease. Christine McSherry gave a featured interview for the Rare Disease Report about her meetings with the FDA. View the video here.
Jett Foundation Attends Rare Disease Scientific Workshop
Christine McSherry attended the Everylife Foundation's workshop this week with other key stakeholders to focus on improving the clinical development process for lifesaving treatments. It brought together  leaders from FDA, industry, academia, NIH and patient advocates to generate near term achievable solutions to the challenges of rare disease drug development.
 
 
We love Tom and Bill. 
Thanks to the New England Patriots for hosting us at 
the 2014 Training Camp.
Thank you Pembroke Woods!
The Pembroke Woods Housing Development's Annual Pool Party raised funds for the Jett Foundation. 

L to R: Michelle Burt/Pembroke Selectman, Erin O'Donnell/Pembroke Woods Manager, Jenn McNary/Program Manager at Jett Foundation, Christine McSherry/Founder of the Jett Foundation and Jett's Mom, Vinny DeMacedo/State Rep. for Plymouth and Candidate for State Senate and Arthur Boyle/Pembroke Selectman

 

  

Have a great idea for a fundraiser? We'd love your support. Contact us and learn how your party or event can help 
end Duchenne. 
Gals Rock the Title 9 Triathlon
 
 Fifty five Gals swam, biked and ran on September 7th in support of those with Duchenne and the community. This amazing group of athletes raised more than $50,000 with funds still coming in!

 

Summer Recap: The days are getting shorter but the glow of an incredible summer stays with us!

Very Happy Campers  
Camp Promisewas an enormous success with 55 campers at our 3 locations - Camp Promise East in PA, Camp Promise of the Rockies in CO and Camp Promise West in WA.  


 

JettRiders Go Coast to Coast 

Eight cyclists covered 3,500 miles across 15 states and visited 30 families affected by Duchenne. Read more about the JettRide.      


 


 


 

Tri for Jett Triumphs

The Tri for Jett triathletes raised $30,000 for the Jett Foundation, Many thanks to Laura DeSisto and Paul Wahlberg for their work and support! Learn more about the TFJ team. 

          
 



Our Goal: Eliminate the challenges of Duchenne through research and services. 


68 Evergreen Street, Suite One
Kingston, MA 02364
(781) 585-5566