For Finley Craig, a full-time Aerospace Engineering student at the University of Colorado Boulder, “rocket science” isn’t just a figure of speech—it’s her daily homework. This November, she’s applying the same intense focus she gives her school work to a new challenge: running her first-ever TCS New York City Marathon. As a member of Team…
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For Fernanda Depari Estelles Martins of São Paulo, Brazil, taking on a new challenge is second nature. Last year, to celebrate her milestone 40th birthday, she completed an incredible 40 races. This year, she’s channeling that same determination into her biggest athletic challenge yet: the TCS New York City Marathon. But this race is different….
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On Sunday, November 2nd, Team AFBS’s dedicated runners will be at the starting line of the TCS New York City Marathon. Among them are mother and son Amara and Aidan Andrews. They are each running 26.2 miles to honor Liv Shimanovsky, a 13-year-old born with the rare neuromuscular disease, Nemaline Myopathy (NM). NM causes muscle…
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AFBS Announces Key Board Leadership Appointments A Foundation Building Strength (AFBS) announces important changes to its leadership, marking a new chapter focused on strategic growth and continued dedication to our mission. We are pleased to welcome Leticia Machado as the new President of the Board of Directors and Adrian Gomez as our newest board member….
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The much-anticipated 2025 SciFam Conference, held from August 1-5 in Philadelphia, has concluded, and AFBS finds itself newly re-energized by the connections made and progress shared! This vital gathering brought together individuals and families affected by NM, Congenital Muscular Dystrophy (CMD), and Titinopathy, alongside a passionate group of clinicians and researchers from around the globe….
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We’re excited to share a vital Nemaline Myopathy research update from the front lines! Dr. Vandana Gupta‘s lab is making significant strides in two crucial areas of Nemaline Myopathy (NM) research: gene therapy for KLHL40-related NM and small molecule drug screening for KLHL41-related NM. These efforts are bringing us closer to understanding and treating this…
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Dreaming of a getaway but wondering about accessible travel? You’re in luck! A Foundation Building Strength (AFBS) recently hosted an incredibly informative webinar, “Accessible Adventures – Travel Q&A with Cory Lee,” as part of our “Building Strength Together” Webinar series. Led by moderator and AFBS board member Lyn Baier, we spoke with renowned accessible travel…
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A Foundation Building Strength (AFBS) is absolutely thrilled to present our NM Awareness Month Recap and look back on a truly impactful May! For families and individuals touched by this rare neuromuscular disease, awareness is deeply personal – it’s about sharing our stories, speeding up research, and ultimately, building a path toward effective treatments. Our…
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Meet Liv, a thoughtful and determined 13-year-old navigating the complexities of her teenage years and Nemaline Myopathy (NM) in Los Angeles, California. For those not familiar with Nemaline Myopathy, it’s a rare neuromuscular disease that weakens the muscles throughout the body, including those involved in movement, speech, swallowing, and breathing. The way NM manifests and…
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Meet Priscilla, a bright and inquisitive 9-year-old from Mason, Ohio, living with Nemaline Myopathy (NM). NM is a rare genetic condition affecting the muscles, leading to significant weakness throughout the body. Priscilla carries the NEB gene variant and is considered to be severely affected by the disease, impacting her mobility, breathing, speech, and swallowing. A…
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Meet Anthony, a 32-year-old graphic designer from the vibrant city of Haarlem, The Netherlands, who approaches life with a practical mindset and a genuine enthusiasm for connection and exploration. Understanding Nemaline Myopathy: Anthony’s Perspective For those unfamiliar with Nemaline Myopathy (NM), it’s a rare congenital neuromuscular disease, rooted in genetic mutations on one of 12…
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