January e-Newsletter




 

We are continually amazed by the generosity of Jett Foundation supporters, and we are delighted to announce that we have surpassed our 2016 year-end giving goal -  THANK YOU!
 
2016 was a monumental year for our patient community with the approval of the first FDA approved therapy for the treatment of Duchenne, and in 2017 Jett Foundation will continue to advocate for policies that accelerate the development of safe and effective treatments as well as expand upon our service programs that directly affect the every day lives of patients and families. 
jett and christine

Best,
christine signature
Christine McSherry 
Jett Foundation Founder and Executive Director



Educational Roundtable Program
We can't wait to see you!

In 2017 we will continue to empower patients with information and education about programs, services, and opportunities in the Duchenne community. Our traveling Educational Roundtable Program reaches families in remote areas of the country who may be unable to travel to large annual conferences. During these FREE 4-4.5 hour interactive events, physicians, researchers, industry sponsors, and members of patient community present on topics relevant to families affected by Duchenne. We want to hear from you, too, so we always make sure there is time for questions from the audience!   


Jett Fou nd ation's  1st Annual Gala
Shine a Light on Duchenne 1/26/17
Museum of Science, Boston

Jett Foundation is celebrating 15 years of fighting Duchenne muscular dystrophy. Please join us for a night of celebration as we reflect on the Duchenne community's accomplishments and focus on making even more progress towards meeting the unmet needs of our patient community in 2017. 



Tri4Jett 2017
New Date! Sunday June 25th in Cohasset

Tri4Jett is moving to Cohasset and sponsored by our friends at Goodale Insurance. This event sells out every year - but Jett has spots availalable!   

Jett Ride 2017
Save the Date: July 12-28th
Ohio to New Jersey

Want to raise awareness and funds for Duchenne this summer in a fun, healthy, adventurous way? Join the 2017 JettRiders as they cycle from Ohio to New Jersey, white water rafting, sightseeing, and visiting with families affected by Duchenne the whole way! 

CAMP PROMISE 2017
Announcing 2017 Camp Dates!
 
Camp Promise-East (CT):  
July 2-7, 2017
Camp Promise-Rockies (CO):  
July 31-August 4, 2017
Camp Promise-West (WA):  
August 21-26, 2017

Checkout our NEW Camp Promise website. Same URL, www.camppromise.org, just a new design. We built it with you in mind-- with new photos and new content, it has everything you need to get ready for camp this summer. Applications for Summer 2017 will be coming soon!      
And, a huge shoutout to our unit leaders, counselors, campers, and parents who submitted testimonials and contributed content to help us bring our website into the 21st century!  #notthe90sanymore
 


golf ball logo
Jett Golf Classic 2017
New Date and Location!
Monday June 5th at Black Rock in Hingham

Its never too soon to start thinking of the warm days of summer.  We are excited to host our event at Black Rock Country Club this year on Monday June 5th.   S tay tuned for more info or email alissa@jettfoundation.org!

New Way to Donate!
Jett Foundation can now accept stock donations. Click below for a simple way to donate your stock to Jett Foundation.


The Latest Industry Partner News
Jett Foundation collaborates with industry partners who are developing potential treatments for Duchenne. Read more about their recent updates below. For additional information on clinical trials in Duchenne, please go to  clinicaltrials.gov

Sarepta Therapeutics Announces it has entered an exclusive license agreement with Nationwide Children's Hospital, for their Galgt2 gene therapy program developed by researcher Dr. Paul Martin, Ph.D.

Akashi Therapeutics announces it  is working toward having three novel, complementary compounds in the clinic in 2017 with potential to treat all DMD patients independent of their specific genetic mutation.

PTC Therapeutics Provides Corporate update

Catabasis Pharmaceuticals  Reports positive pre clinical data

PTC Therapeutics  CHMP recommends renewal of Translarn's marketing authorization for nonsense mutation Duchenne muscular dystrophy based on continued positive benefit-risk assessment. 
 
Capricor Therapeutics to expand clinical development program in Duchenne muscular dystrophy. 
 
NS Pharma announces fast track designation to NS-065/NCNP-01 for the treatment of Duchenne.
 
Pfizer Duchenne program update