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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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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Announcing a significant milestone in our mission to find treatments for Nemaline Myopathy (NM)! As part of our latest round of research grants, A Foundation Building Strength (AFBS) is officially teaming up with DNA Nanobots, marking our first-ever research partnership with a private biotechnology company. This collaboration represents a bold step forward in diversifying our…
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Announcing the inaugural recipient of the AFBS “Strength in Action” Award. If you scroll through social media, you might stumble upon a video of a toddler with mischief in his eyes and an infectious smile, perhaps insisting–with the vocabulary of a child twice his age– that he needs to go to Waffle House. This is…
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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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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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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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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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