September 2016 Newsletter

 

 
 
Today, September 7th, is the Third Annual World Duchenne Awareness Day (#WDAD16) . This is a global event, but nowhere is it more important than in Cambridge.  This center of innovation, discovery and hope encompasses the ongoing partnership of the entire Duchenne community, including patients and families, researchers and scientists, physicians and nurses, and the companies investing in research aimed to bring efficacious treatments and cures to those with Duchenne as soon as possible.
How can you help?  Get involved - read below about our exciting initiatives and events; # HugsForDuchenne, support our Gals for Cal triathlon team, come to our Komedy show, save the date for our 1st Annual Jett Foundation Gala, or donate today so that we may continue to fill the unmet needs of the Duchenne community through advocacy, adaptive activities and education.

Thank you to everyone for your support. 

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


#HugsForDuchenne
Most of us take (((HUGGING))) for granted - but did you know it is one of the most heartfelt losses suffered by those with Duchenne?  Generous sponsors will be donating $1 per Hug to the Jett Foundation from the dates of September 4th - October 4th.


This is our first campaign of this magnitude and with support of ICUC we hope to have a global reach raising a significant amount of funding for Duchenne programs, advocacy and education. 

 

Camp Promise-West
Jett Foundation's Camp Promise is "not your average camp" and Camp Promise West is no exception - color wars, casino night, sasquatch sightings, and drive-in movie nights!

Check out our Camp Promise-West Facebook page
Gals for Cal 2016 Triathlon
On September 11, 2016 in Hopkinton, MA, the Gals for Cal will once again swim, bike and run for Duchenne.  Please consider joining this incredible group of women or support their efforts.  Please visit their website to learn more.

Jett Foundation Regional Roundtables

Our Regional Roundtable program continues to be a great resource to families and caregivers. Many families have told us these meetings are incredibly helpful as they navigate the often confusing landscape of clinical trial options. Our next Roundtable is scheduled for September 10th in Boston, MA. 
Click here for more info and to register
Save the Date - Friday October 14th in Plymouth
Komedy for a Kause
to benefit Jett Foundation



Save the Date -
Saturday February 4th -
1st Annual Jett Foundation Gala
For additional info please email Alissa

Jett Foundation 1st Annual Gala
Join us Saturday February 4th at the Museum of Science for our 1st Annual Gala.  What better place to celebrate the innovation and advancements effecting Duchenne than Cambridge.  Thank you to our Gala committee members who have dedicated their time and talents to planning this event;
Kate Ardini , John Hancock Financial  
Mary Chiochios , CharityWarriors, LLC 
Kelly Jung , EBSCO Information Services 
Kelly McDonough, The Baupost Group
Mary Pasciucco
, The Ad Club
Jett Livin' Large 2016 Grant Recipients
Selim had a great time at Camp Echo Bridge this summer!
Sammy loved The Bridge Center camp this summer and he made some great friends! Thank you Jett Foundation! 

Spencer enjoyed adaptive horseback riding.
Industry Partner News
The 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 Clinicaltrials.gov

Sarepta Therapeutics  
ESSENCE Study of SRP-4045 and SRP-4053 is recruiting at David Geffen School of Medicine, UCLA. Email Kara Boniface with questions or please see more details at clinicaltrials.gov.  
 
Marathon Pharamceuticals

FDA accepts Marathon's New Drug Applications for Deflazacort for the Treatment of Duchenne Muscular Dystrophy and Grants Prioroty Review.  

Tivorsan Pharmaceuticals
Granted FDA Orphan Drug Designation for Human Recombinant Biglycan in the Treatment of Duchenne muscular dystrophy.   
 
 
 
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