At nine months old, Ella is defined by two distinct realities. To her parents, Erin and Paul, she is a sharp, observant infant with bright blue eyes and a smile that anchors their world. She mimics adult behaviors and is already beginning to learn early sign language with her mother. To the medical world, however,…
Read MoreAdvancing Nemaline Myopathy research. Supporting our community. We are strong where it matters.
Our Impact
Upcoming Events
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Rare Disease Day
Get Ready to “Paint the Town Blue” for Nemaline Myopathy on Rare Disease Day! Saturday, February 28th, join AFBS in raising NM awareness by rocking…
Saturday, February 28, 2026 Online -
AFBS Virtual Kids Gathering (Ages 12 & Under)
Join A Foundation Building Strength (AFBS) for a special virtual gathering designed just for kids ages 12 and under who are affected by Nemaline Myopathy…
Saturday, February 28, 2026 9:00 am – 10:30 am Online -
Los Angeles 5K
𝗥𝘂𝗻, 𝗪𝗮𝗹𝗸, 𝗼𝗿 𝗥𝗼𝗹𝗹 𝗳𝗼𝗿 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵! Join A Foundation Building Strength at the 𝗟𝗔 𝗠𝗮𝗿𝗮𝘁𝗵𝗼𝗻 𝟱𝗞 on 𝗦𝗮𝘁𝘂𝗿𝗱𝗮𝘆, 𝗠𝗮𝗿𝗰𝗵 𝟳𝘁𝗵! We’re gathering the Southern California…
Saturday, March 7, 2026 8:00 am Dodger Stadium
Los Angeles, CA
FOR OUR COMMUNITY
We are dedicated to our mission of finding treatments for Nemaline Myopathy, while providing support and resources to the Nemaline Myopathy community.
On the Blog
The Genetic Eraser and Pen: A Universal Strategy for 200+ ACTA1 Nemaline Myopathy Mutations
At A Foundation Building Strength (AFBS), we’re striving to give Nemaline Myopathy patients access to effective treatment, regardless of how rare their specific genetic “typo” might be. We are excited to provide an update on the ground-breaking work of Dr. Afrooz Rashnonejad, a Principal Investigator at the Center for Gene Therapy at Nationwide Children’s Hospital….
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