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Sep. 28, 2015

TOPIC: Featured News

Dravet Syndrome Foundation

Posted by Christina Jensen
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Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.
1.) What does it mean to you personally to be a patient organization serving the rare community?
When facing a rare disease diagnosis, it is easy to lose hope. The Dravet Syndrome Foundation allows parents to come together in different ways – through our parent support group, our biennial conference or fundraising/awareness events – to empower and educate themselves, while helping to impact the future of treatments and outcomes for this disease.
2.) What do you find your patient community values most from your organization?
Certainly the initial value is having a place to turn for answers after receiving a diagnosis, and the feeling that you and your family are not alone. Our community also values the many programs and events we offer that allows them to either educate themselves or medical professionals, as well as the ability to directly connect with other families.
 
3.) What are some of the challenges your organization has faced?
When our organization began, it was formed by a few parents who hoped to raise $100,000 to fund a research grant. Seeing research being funded was very exciting for our community, who then rallied behind us. Thanks to the efforts of our community, we have awarded over $2M in research grants and over $80K in patient assistance grants since our inception in 2009. Our biggest challenge has been our rapid growth. While it sounds like a great problem to have, we needed to work quickly to assure that the organization had a strong structure and the proper leadership to move it forward.
4.) Whats been your most successful awareness campaign and/or fundraising event?
We have several annual fundraising events, but the most popular has been our Steps Toward A Cure series which consists of family-friendly events, walks and/or 5K races hosted by families throughout the US. It gives families the opportunity to raise awareness and funds for research in their community, while honoring and celebrating their own child with Dravet syndrome.

Address

PO Box
West Haven, CT 06516 USA

Phone

203-392-1950

Fax

203-880-9456

NORD is happy to be putting the spotlight on the Dravet Syndrome Foundation this week. You can look forward to social media posts on our Facebook and Twitter accounts about Dravet Syndrome Foundation throughout the week! Member Organizations to NORD interested in Member Spotlight should contact their regional membership managers at NORD to learn more! 

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