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

Rating: 5 stars  

I have been very active in the world of Dravet Syndrome for 6 years, working on committees and with various professionals. Two years ago, I wanted to step back as I felt that I had done "my bit" and wanted to spend more time with my family. However, I was so impressed by the drive, commitment and professionalism of the DSF, that I felt I just had to join them to support them. I had already worked with one of the co-founders of the DSF, in another organisation, and knew that she would take the organisation forward to achieve great things for Dravet families and research towards a cure. The DSF was also the only organisation committed to funding research for a cure. For me, that was (and still is) the most important objective.

As a volunteer, especially already with huge stresses of everyday life, including having a child with Dravet Syndrome, it is so important to have faith in the organisation, to see efficient use of all of the resources and, perhaps most importantly, to see tangible results of your volunteer efforts. I have taken great pride in representing the DSF in various meetings with doctors. It is hugely satisfying to work together and to see ideas turn into concrete plans, which have then gone on to achieve results, such as the annual DSF research Roundtable, in which researchers and doctors share information and collaborate.

The DSF continues to achieve amazing things. It supports families AND the researchers who are working so hard to find a cure. These researchers constantly need money but also encouragement, to keep them working and motivated, both of which the DSF provides, very successfully. Its professionalism and integrity continually attracts more and more supporters, from the people who fund raise, to researchers, to the clinicians who manage our childrens medical needs. Still more is needed, to get us to THE cure for this catastrophic disease.

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Did the organization use your time wisely?

Quite well

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Role:  Volunteer