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.