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.
2024 Impact Report
We’re excited to share our 2024 Impact Report, “On the Road to Treatment,” showcasing a year of significant progress in our search for treatments for Nemaline Myopathy. This report highlights the strides made in AFBS-funded research projects, our expanding efforts to raise awareness and foster community support, and the dedication of our staff, scientists, donors and community members who are vital to our mission.
Inside, you’ll find detailed updates on our research initiatives, insights into our financial stewardship and fundraising efforts, and a clear picture of how your generous support is driving meaningful impact. Discover how we’re working to accelerate the development of therapies and improve the lives of individuals affected by NM.
Research Milestones
AFBS has made significant milestones toward our mission of finding treatments for NM:
- Developed Standard of Care Protocol for NM + a Guide for families caring for NM
- Funded the first CRISPR/Cas9 Gene Editing project of an NM gene (NEB)
- 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”.
- FACES OF NM: Enilton Neymakes Morais – A Polyglot Globetrotter with Nemaline Myopathy
- FACES OF NM: Harneet Sandhu is Navigating Nemaline Myopathy with Resilience and Advocacy
- FACES OF NM: Alexandra is Finding Strength in Every Breath
- FACES OF NM: A Mother-Son Duo Finding Strength Together
- FACES OF NM: Mila, Warrior Princess
