Category: Events

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…

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…

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….

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…

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….

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…

May is Nemaline Myopathy Awareness Month, a time for our community to come together, share our stories, and amplify our voices. This year, A Foundation Building Strength is thrilled to introduce an exciting new way for everyone – NM community members and the public alike – to get involved: The NM Awareness Share-A-Thon! WHAT IS…

This past weekend, Nemaline Myopathy community members of the New York area and our board members came together to cheer on Team AFBS as our five amazing runners tackled the iconic New York City Marathon. In addition to spending months training and bringing awareness to Nemaline Myopathy (NM), these generous marathoners raised over $30,000 for…

This past weekend marked the start of something truly special for the NM community. A Foundation Building Strength launched their “Building Strength Together” Webinar Series, a platform designed to foster connection, support, and education for individuals and families navigating the challenges of NM. The first session focused on Emotional Wellness, a critical but often overlooked…

The 2023 TCS NYC Marathon was more than just a race; it was a powerful demonstration of collective strength, determination, and unwavering support for those affected by Nemaline Myopathy (NM). A Foundation Building Strength (AFBS) spearheaded a team of remarkable individuals who not only laced up their running shoes but also rallied communities and hearts…