Events/Initiatives
Blankets For Our Cause: Celebrate Rare Disease Day, February 29, by shopping the Zebra Zeal blanket by ChappyWrap from February 19-29, 2024. ChappyWrap will donate 30% of all Zebra Zeal blankets to Charlie’s Cure, in recognition of the rare disease “zebras” of a different stripe among us (Charlie included)!
Newborn Screening Research: In 2023, New York State became one of the first to act to include DMD in the standard newborn screening tests every baby receives. Currently, the average age of DMD diagnosis is five—meaning we have never before had an opportunity like this to gather DMD data from patients’ very first days of life, across a large state like New York. The information gleaned from the screening about to begin there will be pivotal to the adoption of screening in all 50 states, the advancement of DMD knowledge and research, and our understanding of the power of early care & treatment. But someone needs to gather that information.
Please consider supporting this vital work through the University of Rochester, where Charlie received gene therapy.
To give to this campaign, simply click here, add your donation amount, and in the “notes” section type “New York State Newborn Screening Project.” For more information, contact Jennifer Handt.
One boy. Infinite possibility.
The Fund
The Charlie’s Cure Fund is a donor-advised fund sponsored by Fairfield County’s Community Foundation, and managed by our family with our goals for Charlie and other children & families in mind. Through this fund, we welcome tax-deductible contributions that we direct to organizations that help advance care, treatments and a cure for Duchenne. When you give, you have the opportunity to change lives and support progress that is quite literally medical history in the making.
From the bottom of our hopeful hearts, we thank you.
Contact
Stay in touch and learn more: info@curecharlie.org