March Update

 
Dear Friend,  

We are so proud of the 109 Congressional Representatives who are standing with the Duchenne community! Read the letter here that was sent to Dr. Janet Woodcock at FDA urging the agency to "utilize all available tools, resources, and authorities" in reviewing a treatment for Duchenne muscular dystrophy and read our blog about it here. 

While we are still waiting to hear from FDA when Sarepta's Ad Comm will be, we are steadfast in our objective to support the review of eteplirsen under accelerated approval. We are still asking that FDA - finally - do the right thing and say "yes" to this treatment, and do it now. We can't afford to wait a day longer than we have to. It's already been too long. 

As we wait, we are busy working. We are making our story know in the media - things like this Boston Business Journal story and this radio program from Our American Network. We are proud to be part of the rare disease community and part of the movie, Rare in Common, that premiered on on Feb. 29th. 

Get your tickets today for Cooking for a Cause!  We have an amazing line-up of chefs and bakers creating delicious tastings for Monday, March 7th at Yale Appliance. 

Our Roundtables continue to be a great success bringing together families, caregivers and industry to create more understanding. Don't miss the next one in Colorado on April 30th. 

And mark your calendar - good stuff coming up!

Monday, March 7th - Cooking for a Cause in Boston
Tuesday, March 22nd- JettRide is hosting an information session at our office in Kingston, for more information email Michelle
Wednesday, June 1st - Save the day for a great day of golf at the Jett Classic!
Campers get ready! Camp Promise registration coming soon!

Thank you to everyone for your support. 

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


Rare Disease Day Lunch


More then 50 community members, industry partners and friends joined the Jett Foundation for a lunch to recognize Rare Disease Day. 
Thanks to all who attended. The lunch featured an award to Sarepta for their work and the announcement of the Duchenne Biotechnology Council, a group that will promote transparency among local companies developing drugs for Duchenne. Read more in the Boston Business Journal. 
McSherry honored by Ad Club's Women's Leadership Forum


 Christine McSherry was honored at Boston's Ad Club's Women Leadership Conference with the 2016 John Hancock ADmiration Award. Thanks to all who made this honor possible. 


Roundtables success continues - educating families and caregivers
Thanks to all who attended the Houston Roundtable. Many thanks to our company participants and sponsors and especially Dr. James Poysky for the session on learning and behavior. Here are the slides from his presentation.

 
"We are seeing a total ripple affect from these great information sessions. Folks are taking the information they learn, and are discussing and sharing it on social media like Facebook. Families who aren't able to attend, are still able to learn important information about clinical trials and Duchenne research. The roundtables are having even more impact then we ever imagined."
-Christine Mcsherry, Jett Foundation
Many thanks to our sponsors and partners. If you're interested in helping make an impact with these informative meetings, contact Maura

Get your tickets for Monday, March 7th!
 
                   

                   WHEN     Monday, March 7th
                                   From 6 pm to 10 pm

                   WHERE   Yale Appliance + Lighting

                   TICKETS   $100

Join the Jett Foundation for an evening of inspirational bites, wine tastings and cake samplings. The following chefs are donating their time and talent to prepare wonderful bites, with all proceeds going to 
the Jett Foundation.

Paul Wahlberg, Wahlburgers & Alma Nove
Tom Berry and Juan Pedrosa, Yvonne's 
David Punch, Sycamore & Little Big Diner
Adam Kube, Bastille Kitchen
Robin and Jill King, Restaurant ORO
 Museum of Science was a blast.
Thanks to all who came out 
for a terrific day at Boston's 
Museum of Science.
 This was a part of our 2016 
Adaptive Programing.
 
Stay tuned for more events 
 - like Camp Promise!

Camp Promise - East (CT): July 4th - 9th
Camp Promise - Rockies (CO): July 25th - 29th
Camp Promise - West (WA): August 22nd - 27th

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Jett Foundation | 68 Evergreen Street, Suite One | Kingston | MA | 02364