January 2016

This month, we are headed to FDA on the 22nd for Sarepta's Advisory Committee. This is a historic moment for Duchenne and the opportunity to make our voices heard. There is an unprecedented collaboration of organizations and academic institutions working together to #makeduchennehistory.

We are waiting for the FDA to say yes. Like these kids:

Come with us and make your voice heard. If you haven't signed up yet - GET REGISTERED TODAY!

Can't make it, but have something to say? SEND IN YOUR TESTIMONY by 11:59 pm tonight.

READ THE TESTIMONIES, they are amazing. More are coming in all the time. We will continue to post but this is an incredible display of the strength of the Duchenne community and the need for treatments.

This is going to be an unprecedented meeting with over 300 patients and families registered and the number is growing. We have over 40 global organizations, foundations and academic institutions collaborating on a letter to FDA urging for the approval of eteplirsen.

We are standing on the precipice of what we have been fighting for since 2001. We are changing the paradigm of how drugs are approved and making the patient perspective count. And this is about more than just Duchenne, it's about changing the model for how drugs are approved for all rare diseases.

Thank you to all who support and donate to the Jett Foundation because we are achieving our goals and making the future better for all affected by Duchenne.

We need to continue and there is still much work to be done. We need more programs, more camp, more advocacy. We have great things on the radar screen for 2016 and we need your support and participation.

Check out our Roundtables for 2016 - this is a great opportunity to learn about clinical trials and how to be a better patient advocate.

Donate! We need your support to get treatments to all affected by Duchenne and to support the programs to make lives better. And if you want to help a family get to Sarepta's Advisory Committee, go here.

Thank you for being dedicated to ending Duchenne.

Best,

Christine McSherry, Jett's Mom

Executive Director, Jett Foundation

Deadline is extended for the Livin Large Fund!

The Gals for Cal Triathlon team is funding a new initiative called the Livin Large Fund at the Jett Foundation to directly assist Duchenne families living in MA and NH. This grant program has been created to help improve the quality of life for Duchenne families and to help ease the financial burden it places on families, an area of unmet need among the Duchenne community. These grants will allow children diagnosed with Duchenne to participate in adaptive services and activities.

Learn more about how you can get funding or help support this initiative.

A huge thanks to the Gals for making this possible.

Save the Date - Monday, March 7th!

Cooking for a Cause

Celebrity Chefs and Bakers unite for the Jett Foundation

Save the date for an evening of delightful bites with fabulous Chefs . . . .

Paul Wahlberg, Wahlburgers and Alma Nove

Tony Ambrose, Ambrosia

David Punch, Sycamore and Little Big Diner

Juan Pedrosa and Thomas Berry,Yvonne's

and amazing Bakeries . . .

Montilio's, Cakes by Erin, Cakeology, Cupcake Mojo and Dessert Works

Thanks to our sponsoring host, Yale Appliance

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