November Update

There is hope where there was never hope before. 

This week I ran into an old friend and I heard myself say, I think we have saved Jett's life. 

And the more I think about it, I think we did. He is probably one of the sickest kids that started eteplirsen and he is doing great. 

We remain disappointed that FDA has moved Sarepta's Advisory Committee until January 22, but are dedicated to continuing our work to make the Duchenne community voice heard and to make progress in drug development. 

So thank you to all who support and donate to the Jett Foundation because we are achieving our goals and making the future better for all affected by Duchenne. 

We need to continue and there is still much work to be done. We need more programs, more camp, more advocacy. We have great things on the radar screen for the remainder of 2015 and 2016 and we need your support and participation. 

Check out our Roundtables for 2016 - this is a great opportunity to learn about clinical trials and how to be a better patient advocate. 

In Boston? Join us Saturday night for a fabulous party!

Donate! The time is coming for end of the year donations. Make sure the Jett Foundation is on your list and make your end of the year gift today. 
Thank you for being dedicated to ending Duchenne. 

christine signature
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation
Introducing the Livin Large Fund!
The Gals for Cal Triathlon team is funding a new initiative called the Livin Large Fund at the Jett Foundation to directly assist Duchenne families living in MA and NH. This grant program has been created to help improve the quality of life for Duchenne families and to help ease the financial burden it places on families, an area of unmet need among the Duchenne community. These grants will allow children diagnosed with Duchenne to participate in adaptive services and activities. 

A huge thanks to the Gals for making this possible. 

November 14th Party! - #notjustwhiskey
Live near Boston? Get your tickets for Saturday Night!
Join us for beer, wine, smooth jazz, delicious bites and a distillery tour at the Boston Harbor Distillery to benefit the Jett Foundation. 

$100 per person

7:30 pm - 11:00 pm

Boston Harbor Distillery
12R Ericsson St. Boston, MA 
Community Letter to the FDA about Sarepta 
As a member of the Duchenne Alliance, we are proud to be a co-signer of the recent letter to the FDA and Dr. Janet Woodcock in response to the change of Sarepta's Advisory Committee. Thank you to the Race to Yes, the other members of the Duchenne Alliance CDMD at UCLA and PPMD for working together. 

The letter asks Dr. Woodcock to consider moving Sarepta's Advisory Committee date to the same week in November as BioMarin's. It also asks the agency why the Advisory Committees are separated and what this separation of time could mean for review.

Patients Impacted by Delay of FDA Review 

FDA's decision to move Sarepta's Advisory Committee meeting is impacting the Duchenne community.
New England Cable News and the Boston Business Journal featured reports on this story. 

Watch the NECN video here.
Read the Boston Business Journal article here
The Right to Try

Austin and Max Leclaire, sons of Jenn McNary, are featured in chapter one of a new right to try book. 

"Having a child that is dying is the most painful thing in the world," Jenn says. "The only thing that is more painful is having a child that is dying and knowing there is a drug that could help them, and not being able to have access to it. It's a crime." 

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