Swings for Finn
Time & Location
About the Event
On November 18, 2020, our son Finn was diagnosed with SELENON (SEPN1), a type of Congenital Muscular Dystrophy (CMD). To say we were shocked is an understatement. LIke many, there is not anyone in our family who has any (known) genetic disorders, but in hindsight, Finn started showing signs from the beginning. We immediately immersed ourselves in research about SELENON, we started talking to doctors, joined research studies, you name it! The one thing that we kept hearing over and over again was that because this disorder was so rare, money to support research was minimal. During a time where we felt helpless, our family decided fundraising would be a great way to support all with SELENON and also allow us to feel like we could start making a difference for Finn.
We started our fundraising efforts at the end of last year, and want to continue this important work through our upcoming Swings for Finn golf fundraiser. I hope you'll choose to join us on our journey either through sponsorship, donations or participation in the tournament. Every dollar raised, and every donation made, will make a major impact on future research for Selenon-RM.
We are so grateful to all those who are contributing and continue to support efforts that raise awareness and funding. The kindness and generosity of so many not only gives Finn hope for a treatment in the future, but hope that this disorder will not go unnoticed and receive the same research opportunity as other more widely known genetic disorders.
Thank you for helping us fund important research and for working to ensure a brighter future for Finn and others with CMD.
-Finn Curley and the entire Curley family