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ScottC

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1 Reviews

Clearwater, FL USA

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Dravet Syndrome Foundation, Inc.
November 1, 2012

My son was diagnosed with Dravet Syndrome back in 2002, with genetic verification in 2003. Sadly, my son is one of the Dravet Angels, and passed away from Sudden Unexplained Death in Epilepsy (SUDEP) back in June of 2008. He was 8 years old when he passed away. While SUDEP was my son's primary cause of death, Dravet Syndrome is listed on his death certificate as his secondary cause of death. Over the years, I have had the privilege of knowing the co-founders of the Dravet Syndrome Foundation (DSF) personally before they started the DSF, and after my son passed, I wanted to give back to the DSF by volunteering at their annual fundraiser. The DSF raises much needed research funds, as well as monies allocated for cooling vests, seizure dogs, iPads, and other items needed by Dravet Syndrome families in need. I look forward to volunteering at DSF events for years to come!

More feedback

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

MY ROLE:
Volunteer