SEPTEMBER UPDATE
Thank you Senator Elizabeth Warren for your ongoing support of the Duchenne and rare disease communities. Photo from last week with Christine McSherry and Jenn McNary. 
 

Last month, the Duchenne community was given good news about FDA accepting Sarepta's New Drug Application for it's compound, eteplirsen. 

This shows there is true HOPE for those with Duchenne and their families. Our hard work is paying off and we need to continue until all have a treatment. This has been a four year battle but the end is in sight with a possible decision from FDA by early 2016. However, we are going to need your help. 

Next up in the process to drug approval is Ad Comm, the FDA's Advisory Committee, you can read more about it here

The Ad Comm for Sarepta's NDA will take place in November. This is our opportunity, as advocates and caregivers, to give our input and let the FDA know that it is critical to approve eteplirsen and get it to those who need it as fast as possible. 

We need your support and community action to make our voices heard and to get the drug approved. Here's how you can help. 


Thank you for being dedicated to ending Duchenne. 
Best, 
christine signature
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation
Want to learn about Clinical Trials?
Join one of our roundtable discussions and get your questions answered!
 
Currently, there are approximately 62 ongoing clinical trials for Duchenne listed on clinicaltrials.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. 

More locations - coming soon. 
Thanks to everyone for participating in Pittsburgh on Saturday!
Learn more - email Jennmc@jettfoundation.org or click here. 
Ohio, Boston and UCLA Roundtables
Thanks to our sponsors and participants for our Boston, UCLA and Ohio Roundtables. They were a great success - check out the details on our facebook page.

Special thanks to Jenn McNary for organizing, to company representatives and sponsors from Sarepta, Biomarin, PTC Therapeutics, Pfizer, Catabasis, Santhera,
Bristol-Myers Squibb, and Akashi for working in the rare disease space, discussing efforts in trials and or supporting the Roundtables. Thank you to parents and caregivers for coming and participating. Much work remains to be done but progress is evident!




MORE HAPPY CAMPERS!
 
 Jett Foundation's Summer Camps wrap up with Camp Promise West. 
 
Camp fires are out and the s'mores are all eaten. Thanks to you, our wonderful donors and supporters, the Jett Foundation hosted three amazing camps this summer!

Thank you for giving the gift of summer fun, friends, warm days, swims in the pool, canoe paddles, proms, talent shows, pranks, all sorts of sports and laughs. 
 
Campers, see you next year!

Thank you to all our volunteers, counselors and camp directors!
Four Families Fighting to Save their Sons
Documentary, To the Edge of the Sky featured on WCVB 5

 

Chronicle reporter Anthony Everett sat down with Christine McSherry and Jenn McNary to discuss the film. 

 

Watch the piece here.

 

 

CONGRATULATIONS TO THE GALS FOR CAL AND THANKS TO THE KIDS FOR CAL!
Congratulations to the Gals for Cal who raced on Sunday.
Thank you for your support!


And a huge thank you to the 
Kids for Cal who participated 
Sunday, July 19th in the New England Kids Triathlon at M.I.T.

 

WEBSITE  |  ABOUT  |  NEWS |  EVENTS |  PROGRAMS | CONTACT
Like us on Facebook         
Copyright 2015. All Rights Reserved.