Our Mission
BCAP31.org supports families affected by the BCAP31 gene variant, clinicians treating patients, and researchers pursuing treatments by collaboration or funding efforts.
We search to identify anyone affected by, or interested in, the BCAP31 gene variant. We share information about therapies, medications, and assistive technologies that support common symptoms of BCAP31 disorders. We collaborate and share information to move science further. We believe in not reinventing the wheel by sharing data and working as a team.
Our Team
We are just getting this organization off the ground and intend to add more members and a Board of Directors over the coming months as we work on completing registration for 501(c)(3) status.
Anna Wilson
Founder
Anna's son, Alan, was diagnosed with BCAP31-related disorder in May 2020 when he was 16 months old. When Alan was diagnosed, there was very little information available to help us understand what this diagnosis would mean for our family. After connecting with other affected families on Facebook and attending the Global Genes 'Week in Rare' conference in September 2023, she was inspired and empowered to launch BCAP31.org to share experiences with BCAP31 gene variants.
