DHDDS Heroes
The amazing people who continue to support us.
Thanks to all those who continue to support DHDDS research with Fundraising challenges and events.
Here are a few of the faces that are helping us get one step closer to a treatment and cure for DHDDS mutations.
Music Time owners The Vesalpour Family - for doing a fundraiser November 2024 called Save The LP that raised 50k for upcoming research projects. We cannot thank them enough for their generosity and time spent really organizing such an incredible thoughtful event!
Troop 30012 Sellwood Moreland Oregon - This Girl Scout Troop raised 500$ for Cure DHDDS & Frances Changed My Life org, in 2024 and they have set out to do the same in 2025. We are so grateful for their consideration and support. It is so lovely to see these young girls go out of their way to raise funds and awareness for rare disease research.
Mike Gomoll of Joey's Song Foundation Madison Milwaukee - Mike really has been so supportive of Cure DHDDS & Frances Gourley a 13 year old diagnosed with DHDDS. Portugal. The Man has performed at this event for a few years. Joey's song supports epilepsy research in honor of Joey, Mikes son who passed away from Dravet syndrome. Between 2024 and 2025 we have raised 45k together for Cure DHDDS.
Thank you so much to Aaron Simpson for running 66.6 miles for Cure Dhdds! He raised over 7000$ after completing a 'lastest not fastest' race. This man can run!
Thank you to everyone for bidding on the auction and attending our Frances changed my life fundraiser that took place March 9th in partnership with playing for change. Your efforts raised over 100k for Cure DHDDS research and helped playing for change continue to inspire connection and education through music.