With Valentine's day around the corner, we need to remember that the heart is a muscle too and for those with Duchennne, it is a muscle that is wasting away. Love is not all we need. Those with Duchenne need a safe and effective treatment as soon as possible.
Today we ask for your support and generosity as we work to get those with the disease a drug as soon as possible. Our efforts also focus on providing programs and resources, so those living with Duchenne can live the best life possible.
Our work is making progress this winter, despite the epic snowfall here in Boston! Read below about our recent meeting with Elizabeth Warren and our own staff's national recognition for Camp Promise. Stay tuned for updates on JettRide and Camp Promise.
Lastly, even if you see piles of snow outside your window, the Jett Golf Classic will be here before you know it! Get your foursome ready and put June 3rd on your calendar.
Thank you,
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Proud to have Elizabeth Warren on our side.
Jett Foundation leaders and members of the Duchenne community were honored to meet with Senator Elizabeth Warren at her Boston offices last month. We are grateful to have the support of the Senator and her continued help in the race to approval for safe and effective therapies.
| Left to Right: Rhonda Kallman, Chair of Jett Foundation Board of Directors, Jordan McSherry, Jenn McNary, Director of Outreach and Advocacy, Jett Foundation, Elizabeth Warren, U.S. Senator from Massachusetts, Christine McSherry, Executive Director of the Jett Foundation, Tracy Seckler, Executive Director of Charley's Fund and Carlo Basile, Deputy Chief of Staff for Governor Baker's Administration |
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Libby Brockman wins award for her work with Camp Promise
We are so proud of Libby and her success as one of our Camp Promise Directors. Libby received the Jack Weiner Leadership Award at the American Camping Association's national conference last week in New Orleans. The Award recognizes a young person who has demonstrated leadership within the camp community and who has an interest in pursuing a career in camp. We are thrilled she brings her talent to Camp Promise and look forward to terrific camps this summer.
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The Jett Golf Classic
Save the Date
June 3rd, 2015
Camp Promise - East, West and Rockies
Application and dates coming soon
JettRide 2015
Registration and info here
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Kids with Rare Diseases Painted for Awareness
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Austin and Max Leclaire, brothers with Duchenne, and Dan Lake, the artist who painted them.
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The Rare Disease United Foundation launched the Beyond the Diagnosis Art Exhibit at Brown University's Alpert Medical School. Artists donated their time and talent to paint rare disease patients. The Exhibit will travel to medical schools and hospitals across the country to raise awareness about the many unmet needs of the rare disease community. Read more here.
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Our Goal: Eliminate the challenges of Duchenne through research and services.
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Thanks to our sponsor Learn what's next for Duchenne
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