Advancing Nemaline Myopathy research. Supporting our community. We are strong where it matters.

Our Impact

0 % of your donation is invested in Nemaline Myopathy research
0 research studies funded to date
0 + people with Nemaline Myopathy registered in CMDIR
SEE OUR IMPACT

Upcoming Events

  • 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
View All Upcoming Events ›

Get Involved

We’d love to have you as part of our Nemaline Myopathy community! Check out the various way to get involved with AFBS, stay up-to-date, donate, and help us inspire others to join the cause.

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.

You Can Make A Difference

Nemaline Myopathy (NM) is a rare muscle disease that affects all the skeletal muscles in the body, causing muscle weakness.

NM varies greatly in severity, from mild symptoms to premature mortality. It does not affect brain development or cognitive function. Currently no Nemaline Myopathy treatments or disease modifying therapies exist, but A Foundation Building Strength is working aggressively to change this.

On the Blog

Faces of NM: Ella’s Story and the Path Toward Treatment

Faces of NM: Ella’s Story and the Path Toward Treatment

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,…

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The Genetic Eraser and Pen: A Universal Strategy for 200+ ACTA1 Nemaline Myopathy Mutations

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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