February Update

 
Dear Friend,  

While we are still waiting to hear from FDA when Sarepta's Ad Comm will be rescheduled after the blizzard related delay from January 22, 2016, we are steadfast in our objective to support the review of eteplirsen under accelerated approval. We will update you as soon the Ad Comm date is posted on the Federal Register. Please stay tuned to our Facebook page for up to the minute information. 

We are busy preparing with our coalition of advocates, families and supporters for the Open Public Hearing (OPH) for eteplirsen. We commit to you that it will be impactful, intelligent, data driven and balanced with passion - for the best possible outcome, drug approval. We believe it is safe, effective and and know that our Duchenne community can not wait another day. It is time for the FDA to say yes. 

Here's how you can help and get involved. 

1. Join the Duchenne Community in Silver Springs, MD! 

2. Share your story with the media
Here's our Media Kit and Talking Points to reach out to the media. 

3. Contact your representatives

4. Support our work with a donation - DONATE 

The postponement is an opportunity for us. It has allowed FDA more time to understand the science and to hear what we have to say. It is giving us the time to connect with our representatives and ask for their help and it is giving us time to tell our story. 
 
We are 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. We need a new date for Ad Comm and we will be ready when we get it. For more, read our most recent blog questioning how FDA Communicates and written by Jenn McNary. 

Thank you to everyone for your support. 

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


 Successful Roundtable in New Jersey

Last Saturday, the Jett Foundation and Ryan's Quest hosted 45 people and 8 industry partners for another informative Regional Roundtable. Many thanks to Dave, Dr. Kathryn Wagner and Lauren Morgenroth our speakers (photo below right). 









"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

You are invited - 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 Fun  - February 17th!

Join us at Boston's Museum of Science during February break! 

We're excited to check out the Colossal Fossil (a 65-million-year-old triceratops fossil) and other dinosaurs, watch butterlies zooming in the butterfly garden, learn about the birds and natural habitats of New England, discover the differences between energy produced by coal, wind, sunlight, moving water, and other energy sources, explore the cosmos and our Milky Way, and much, much more!

This is a drop-off event open to youth with Duchenne ages 5 and older. We'll provide the entry tickets & staff, you provide lunch (feel free to pack a lunch or send money to purchase food at the museum's Riverside Cafe). Drop off your child at 10am and pick up will be at 2pm.

Space is limited and will fill up, so RSVP to reserve your spot

Questions? Contact Libby.
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