A Foundation Building Strength

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

Resources & Support

Research

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
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Upcoming Events

  • Apr 11

    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 (NM). Hosted by AFBS…

    Saturday, April 11, 2026 9:00 am – 10:30 am ONLINE
  • May 1 – 31

    NEMALINE MYOPATHY AWARENESS MONTH

    May is Nemaline Myopathy Awareness Month, and A Foundation Building Strength is excited to celebrate all month long! We’re raising awareness for this rare muscle disorder…

    Friday, May 1, 2026 – Sunday, May 31, 2026 Online
  • May 9

    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 (NM). Hosted by AFBS…

    Saturday, May 9, 2026 9:00 am – 10:30 am Online
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.

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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.

About Nemaline Myopathy
Who We Are
Advance Research

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.

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On the Blog

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

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
Research

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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