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Review for Dravet Syndrome Foundation, Inc., West Haven, CT, USA

Rating: 5 stars  

The Dravet Syndrome Foundation was formed by parents who wanted to see aggressive research being done in the field of Dravet syndrome that would impact their loved ones and other afflicted with this disease. Although science might not move as quickly as we as parents would like, we want to assure that lack of funding is not what is slowing it down.

We have awarded more grants for research specific to Dravet syndrome and related epilepsies in the U.S. than any other non-profit organization. In less than 2 years since our inception, we have awarded over $625,000 in research grants. We are a volunteer-led organization with no paid employees and little overhead. We pride ourselves on maintaining operating expenses at a minimum to ensure that the gift of every donor truly brings us one step closer to a cure.

We focus our efforts in 4 areas, per our mission: Research Grants, International Ion Channel Epilepsy Patient Registry, International Patient Assistance Grants, and our Annual Research Roundtable for professionals with an interest in Dravet syndrome and related epilepsies.

I've personally experienced the results of this organization in...

the hope we give to families that there will be better treatments and a cure! We have been contacted by many families who have joined us in our fundraising efforts and who appreciate that we are focusing our energies on funding syndrome-specific research that will help their loved ones. This is a devastating disease and we are proud to be raising hope through research.

If I had to make changes to this organization, I would...

We are striving every day to come up with better ideas for fundraising and raising additional research dollars through grants and sponsorships. There is nothing I would change about the organization at this time, except to encourage more people to volunteer and join us in changing the outcome of Dravet syndrome. We have come remarkably far in our short history, thanks to our many dedicated volunteers and our Scientific Advisory Board.

Role:  Board Member & Board member and co-founder. I help with daily office activities as well as with fundraising events and grant writing.