MoCo Couple Launches Non-Profit to Raise Funds for SELENON Related Myopathy After Son Was Diagnosed at 14 Months

Lindsey and Ronnie Curley’s son, Finn, was diagnosed with SELENON/SEPN1 Related Myopathy at 14 months old, on November 18, 2020.  Due to how rare the genetic disorder is, the family has decided to launch a non-profit, Giving Strength Inc., to support research and treatment for SELENON related myopathy.

To kick-off the official launch of Giving Strength Inc, the newly elected Officers and Board Members will host the first ever Giving Strength Gala, with all proceeds from the event will go towards SELENON research and awareness.

Lindsey Curley (Van Coutren) was born and raised in Montgomery County. She went to Captain James E. Daly, Neelsville Middle School, and then graduated from Watkins Mill in 2003. After attending Salisbury University, she moved back home to MoCo living in Burtonsville, MD with her husband, Ronnie. Lindsey worked for a brief time at Montgomery College (MC) partnering with MoCo high school Career Counselors to assist students transitioning from high school to MC.

“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.”