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                   August Update
Jett Foundation was a proud participant of Duchenne Awareness Month 

Communication, Advocacy and Change were the theme's of Duchenne Awareness Month but still part of our daily mission here at the Jett Foundation.  Clearly our voices are being heard with the recent White House Petition Response and an email from Senator Elizabeth Warren.  Both statements voice favorable support of the Duchenne patient community and understanding that accelerated approval for eteplirsen would be good news for our community.

Recent mtg. at Sen. Elizabeth Warren's office

We could not do this without you!  Whether you sign a petition, email your Senator, bike across country, join a triathlon team or donate to camp promise - we are so grateful to all of you!

Thank you for your continued support and hope you have a safe, happy August!

In partnership, 

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Duchenne Alliance
Duchenne Alliance Particpates in Congressional Hearing for 21st Century Cures 

Dave Shultz from Ryan's Quest and Steve Dreher from Hope for Gus, represented the Duchenne Alliance in Washington, DC on July 13th as part of 21st Centruy Cures: Incorporating the Patient Perspective. PPMD (another Duchenne organization leading the fight to end Duchenne) particpated in the panel along with other patient advocates and Dr. Janet Woodcock. As part of the Duchenne Alliance, the Jett Foundation is a supporter of the 21st Century Cures Intiative that aims to accelerate the pace of cures and medical breakthroughs. Christine McSherry and Jenn McNary are very active with this initiative and were mentioned in Frank Saskinowski's presentation during the PCAST report on Drug Innovation. You can watch it here 

Camp Promise

Camp Promise East was a huge success!  Read an open letter from a happy camper's mom.  Stay tuned for photo's from Camp Promise West (August 24-29) and Camp Promise of the Rockie's (August 11-14).  All camps are full this year, but register early for next year. 

Orsini Healthcare -  Ask the Experts 

Jett Foundation is happy to introduce our new friends and corporate partner at Orsini Healthcare.  They have experience and expertise in bridging the gap between drug therapies and patients when it comes to administering and affording life saving drugs for rare disease communities.  Stay tuned for an update from CEO Tom Orsini.

Technology Changing Lives

Jett Foundation initiative put technology into hands of those with Duchenne who need it. Thanks to the support of Fund 51 and Orsini Healthcare for making this possible. 

Gearing up for the Gals!
  Join the Gals for Cal on September 7 for the Title 9 Triathlon in Hopkington. More information

JettRiders get ready to bring it home!

The JettRide left Oregon on June 15th and will be arriving in Point Pleasant, NJ on August 15th. If you are in the area, join us for the spectacular finish. Email Michelle for more information or follow their progress on the JettRide blog.

Tri for Jett Success! 

The Tri for Jett team raised over $25,000 for the Jett Foundation with funds from the July 27th race still coming in. Thanks to Paul Wahlberg for his support of our team and to Laura DeSisto, Tri for Jett Founder and all our sponsors and athletes! 

The Jett Foundation
68 Evergreen Street, Suite One
Kingston, MA 02364
(781) 585-5566

Thanks to our sponsor                                        Learn what's next for Duchenne