A Foundation Building Strength

Funding breakthrough Nemaline Myopathy research. Supporting and Connecting the affected 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

  • Oct 10

    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, October 10, 2026 9:00 am – 10:00 am Online
  • Nov 1

    2026 TCS New York City Marathon

    Cheer on Team AFBS at the New York City Marathon on Sunday, November 1st! Eleven dedicated runners are taking on the incredible challenge of 26.2…

    Sunday, November 1, 2026 8:00 am – 10:00 pm New York City
    New York, NY
  • Nov 14

    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 (NM). Hosted by AFBS…

    Saturday, November 14, 2026 9:00 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

Elevating Patient & Caregiver Voices: New Multinational Study Publication Sheds Light on Nemaline Myopathy
Events

Elevating Patient & Caregiver Voices: New Multinational Study Publication Sheds Light on Nemaline Myopathy

In rare disease research, data only tells part of the story until it includes the lived experiences of those who navigate the condition every day. That vision took a leap forward with the publication of “Nemaline Myopathy Patient and Caregiver Perspectives: A Multinational Cross-Sectional Study” in Neuromuscular Disorders. Made possible through research funding from A…

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Sunrises, Mountain Trails, and 26.2 Miles for NM: Meet Tiffany Hotchkiss
Events

Sunrises, Mountain Trails, and 26.2 Miles for NM: Meet Tiffany Hotchkiss

For Tiffany Hotchkiss, running has long been an anchor in a full, fast-moving life. Long training blocks mean fitting high mileage around a full-time career, regular travel, and everyday family routines. Yet whether she is logging early miles before the workday begins or chasing the fading light at dusk, she finds clarity in the rhythm…

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