Race Away Dravet

Seeing that I don’t have the healing power of God, and I’m a few college degrees away from being a scientist, it is safe to say I won’t be finding the cure for Dravet Syndrome anytime soon. That being said, I vow every day to help keep Dravet Syndrome from further destroying the life of my children, & other innocent children ahead of them, and those yet to follow.

My family is four years in to our Dravet journey. Thanks to the Dravet Syndrome Foundation, and their efforts, we have already seen new drugs brought to market, kids receiving support they didn’t once have, scientists working together internationally looking for a cure, & families finding proper doctors and therapists. Our family has a sense of hope because of this foundation. So often, we donate our money to foundations and have no idea where our funds actually go. In early 2022, I joined the Board of Directors for DSF, and I have been able to see exactly how the funds raised are utilized.

• 75% of donations are used for programs, including research grants, education/awareness, and directly supporting individuals/families effected with Dravet.
• To date 5.6 million dollars in research grants have been distributed. This research has resulted in numerous new medications specifically for DS, and there are many more in the pipeline.
• There is a great deal of research being done specifically with gene modifying therapies, and DSF is a leader in supporting this initiative. Gene therapy may hold the key to finding a CURE.
• Over $200,000 has been given directly to families through the Family Grant Program.

To support the efforts of DSF, I will be raising funds by competing in Ironman 70.3 Augusta. This is my second year raising funds through a race event, and I hope to surpass last year’s amount of $10,000 in contributions. Donations to DSF are 100% tax deductible. I know it’s a lot to ask someone to donate to a cause that may not directly impact their lives, but every dollar raised will help current and future Dravet patient in a significant way.

Thank you for any contributions you are able to make.

- Nate, Whitney, Coop & Colt