We’re proud of the work we’ve been able to accomplish and thankful for the generosity of our supporters as we move toward a stronger future.

250+ people registered in the Congenital Muscle Disease International Registry

8+ countries around the world actively engaged in Nemaline Myopathy outreach and fundraising

5,000+ people reached through community engagement initiatives

Over $6,479,640 invested in Nemaline Myopathy research

12 research studies funded throughout the United States and worldwide in 2022-2023

Research Milestones

AFBS has made significant milestones toward our mission of finding treatments for NM:

  • Developed accurate zebrafish and mouse models for Nebulin and ACTA1 genes
  • Developed induced pluripotent stem cell lines from NM patients

Meet Our Community

The Nemaline Myopathy community is dynamic, representing all ages and degrees of severity. Life with NM can vary greatly from one person to another and we want to celebrate and highlight the individuality of our community. You can meet our community members through these special “community spotlights”.