November 2016 Newsletter
Bir thdays are s upposed to be a milestone, a celebration of growth and change, but since Jett's diagnosis, his birthda y has become a bittersweet reminder of how each passing day is a decline in strength and indepe ndence. 
However, this year was very different from the last. For the first time,  I didn't have that bittersweet feelin g. I have never seen Jett as strong and stable while celebrating with friends and  blowing out his candles . AND just days after his birthday, the best present arrived - Jett received his first in-home infusion of Exondys51!
November is a time to reflect on our blessings. As a mom  
and as a member of the Duchenne community, I have so many things to be thankful for, including  the love and support of family, friends, supporters, fellow advocates, industry partners, and the healthcare providers in the Duchenne community. 
You can see that your support over the years has had a direct impact on Jett's life and I thank you from the bottom of my heart. We must continue to work together to ensure that every patient diagnosed with Duchenne has the opportunity to live as full and fulfillin g of a life as possible .

christine signature
Christine McSherry, Jett's Mom
Executive Director, Jett Foundation

Halloween at Jett Foundation

This year, we celebrated Halloween with a trip to the Harvard Museum of Natural History. From costumes, candy, and a scavenger hunt, to pre-historic selfies and wheelchair races, everyone had a rockin' time.

To join us in the future for year-round accessible social activities for youth and young adults with Duchenne, email Libby at She's always up for suggestions, so if you have an idea for an event or activity, she'd love to hear it!
Congratulations to BBJ Game Changers!
So proud of Christine McSherry , Ed Kaye of Sarepta Therapeutics and all of the Boston Business Journal   #GameChangers !

 Check out the full list here.
Upcoming Events
Jett Foundation Regional Roundtables
Did you know there are nearly two dozen currently enrolling clinical trials for Duchenne?
Jett Foundation's Regional Clinical Trial Roundtables are an educational program that brings resources and information on treatment options and clinical trials directly to families affected by Duchenne in many cities and towns each year.  Patients, their families and their caregivers are invited to this FREE interactive program where childcare and lunch is provided.  Please click here for additional information and for 2017 dates and locations.
Our next Roundtable is scheduled for November 5th in Rochester, NY. 
Jett Foundation's
First Annual Gala
Shine a Light
 on Duchenne Gala
Museum of Science | Boston, MA
Thursday, January 26, 2016 
 7:00PM - 11:00PM
(781) 585-5566

Thank you to our first Gala sponsor!

Coming To a Mailbox Near You!

It's that wonderful, magical time of year when non-profits ask you to consider giving year end donations.  Support Jett Foundation today with an online gift,
or reply to our mailed appeal

Don't forget your Corporate Matching Gifts!
If your company has a matching gift program don't forget to sign up and double your gift to the Jett Foundation! 
The Latest Industry Partner News
Jett Foundation collaborates with many industry partners who are working towards potential treatments for Duchenne.  Read more about their recent updates below.  For additional information on Duchenne clinical trials go to
PTC Therapeutics provides regulatory update of ataluren for nonsense mutation Duchenne.

The Assistance Fund An independent charitable organization has set up an Assistance Fund that will provide financial assistance to eligible patients living with Duchenne.

SareptAssist If someone you know may be amenable to exon skipping or has questions concerning access toExondys 51, please contact Sarpeta's case managers 1-888-SAREPTA 

Catabasis Pharmaceuticals completes target enrollment for Part B of the MoveDMD® trial, a phase 2 trial of edasalonexent (CAT-1004) for the potential treatment of Duchenne muscular dystrophy. To learn more read Catabasis monthly newsletter.  

Sarepta Therapeutics and Summit Therapeutics, plc announce that they have entered into an exclusive license and collaboration agreement granting Sarepta rights in Europe to Summit's utrophin modulator pipeline for the treatment of Duchenne muscular dystrophy.

Santhera Pharmaceuticals starts phase III study (SIDEROS) with Raxone in patients with Duchenne muscular dystrophy using glucocorticoids.

Catabasis Pharmaceuticals and Sarepta Therapeutics announce a joint research collaboration in Duchenne muscular dystrophy. 

Summit Therapeutics plc receives fast track designation for ezutromid in the treatment of Duchenne muscular dystrophy. 

Sarepta Therapeutics Announces that the FDA has granted EXONDYS 51™ (eteplirsen) infusion, an exon-skipping therapy to treat Duchenne muscular dystrophy patients amenable to skipping of exon 51, accelerated approval. 

Summit Therapeutics plc launches online resource on utrophin modulation for Duchenne muscular dystrophy community. 

Santhera Pharmaceuticals announces financial results for the first half year 2016. 

Capricor Therapeutics completes enrollment of HOPE-Duchenne clinical trial. 

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