Congenital Muscle Dystrophy (CMD) is a new road for our family. Our son, Finn was diagnosed at 14 months old, on November 18, 2020, with SELENON/SEPN1 Related Myopathy. To say we were shocked is an understatement. Like many, there is not anyone in my husband's or my 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 mission to raise funding for SELENON research in December of 2020. With an end of the year social media campaign, we were able to raise over $25k. Then, the 1st Annual Swings for Finn Tournament in July 2021 raised over $80k. All dollars raised from both fundraisers went to CureCMD and made it possible to fund TWO $50k grants for research in the hopes of finding a treatment for all impacted by SELENON. 

Every dollar truly makes a difference, and with only one doctor in the U.S. doing research and two in Europe, we can't stop supporting their efforts. A treatment is possible but only with proper funding. Efforts like these take a village and Finn is so lucky to have so many amazing people rooting for him and for a treatment! We are so grateful to all who have supported, donated, volunteered and sent prayers. Giving Strength Inc will keep pushing forward, fundraising and advocating for SELENON.

- With lots of hope, Lindsey & Ronnie Curley