On Sunday, November 2nd, as tens of thousands of runners took to the streets of New York City, five dedicated athletes wore the AFBS logo with a profound sense of purpose. This was the main event. Our Team AFBS runners—Finley Craig, Leonardo Oliveira, Fernanda Depari Estelles Martins, Aidan Andrews, and Amara Andrews—embarked on the 26.2-mile…
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Announcing Our Newest Research Investments to Accelerate the Path to Treatments
A Foundation Building Strength is thrilled to announce our latest round of newly funded Nemaline Myopathy research projects. After a formal Call for Applications that resulted in several promising proposals, our Scientific Advisory Board, with the help of many experts in their respective fields, completed a robust vetting process. We are proud to announce three…
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A Runner’s Meditation: Leonardo Oliveira’s 26.2 Mile Mission
For Leonardo Oliveira, running isn’t just exercise; it’s a way of life. “Running has been my favorite activity for 20+ years,” he shares. “It’s meditation to me, where I balance out the stress and generate ideas.” This November, the 45-year-old from São Paulo, Brazil, is bringing that meditative focus to his third marathon—the TCS New…
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From “Rocket Science” to Road Race: Meet Team AFBS Runner Finley Craig
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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From 40 Races to 26.2 Miles: Meet Team AFBS Runner Fernanda Depari Estelles Martins
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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More Than a Race: How One Family is Turning Miles into Hope at the NYC Marathon
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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A New Era of Leadership
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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Building Strength Together: The NM Community Unites at a Transformative 2025 SciFam!
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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Advancing Nemaline Myopathy Research: An Update from Dr. Vandana Gupta’s Lab
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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Your Passport to Adventure: Recap of “Accessible Adventures” with Cory Lee
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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NM Awareness Month Recap: Our Impactful May!
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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