A Foundation Building Strength

Advancing Nemaline Myopathy research. Supporting our community.

Research

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Our Story

In 2008, a diagnosis of Nemaline Myopathy (NM) led one family to ask a critical question: “What can we do to help?”
That question led to establishing A Foundation Building Strength (AFBS) as a globally respected organization with an unflinching mission to find effective treatments for this genetic disorder that causes weakness in the skeletal muscles, affecting the ability to move, talk, swallow, and breathe.
By uniting leading scientists, clinicians, and determined families, AFBS has built the essential pillars of research—including registries, tissue repositories, animal models, and natural history studies—needed to find effective treatments.
Now, we are doubling down on our efforts to move from basic science to life-changing therapies. But we cannot do it alone.

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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

  • Jul 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, July 11, 2026 9:00 am – 10:00 am Online
  • Aug 1

    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, August 1, 2026 9:00 am – 10:00 am Online
  • Sep 12

    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, September 12, 2026 9:00 am – 10:00 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.

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Latest News

From the Lecture Hall to the Finish Line: A Physician’s Journey to Educate Specialists and Conquer the NYC Marathon for NM
News

From the Lecture Hall to the Finish Line: A Physician’s Journey to Educate Specialists and Conquer the NYC Marathon for NM

Introducing Dr. Kristine Cunniff, Our 2026 Strength in Action Honoree The medical community often speaks of “the clinical gaze”: the objective, trained eye of a physician scanning for patterns and pathologies. But for Dr. Kristine (Kris) Cunniff, a board-certified internist in Rhode Island, that gaze was fundamentally shifted the day her granddaughter, Lexi, was born….

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A Balancing Act: Meet Harneet, a University Student Balancing Academics and the Challenges of Nemaline Myopathy
Community Spotlights

A Balancing Act: Meet Harneet, a University Student Balancing Academics and the Challenges of Nemaline Myopathy

Harneet Sandhu balances a full life. She’s a university student studying criminology, an avid fan of arts and crafts, and the proud parent to an adorable puppy named Mia. She’s also someone who requires around-the-clock care, navigating a world that often struggles to see past her power wheelchair and ventilator. As a featured fundraiser for…

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