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... The post A Runner’s Meditation: Leonardo Oliveira’s 26.2 Mile Mission appeared first on A Foundation Building Strength.| A Foundation Building Strength
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... The post From “Rocket Science” to Road Race: Meet Team AFBS Runner Finley Craig appeared first on A Foundation Building Strength.| A Foundation Building Strength
Meet Team AFBS runner Fernanda Martins! After running 40 races last year, she's taking on the NYC Marathon to support Nemaline Myopathy research for her friends' daughter.| A Foundation Building Strength
Discover why a mother-son duo is running the NYC Marathon for Nemaline Myopathy. Their journey to the finish line is a powerful mission to fund critical research for a friend.| A Foundation Building Strength
Our Board provides oversight of our Nemaline Myopathy research investments, programs and the organization’s financial health.| A Foundation Building Strength
AFBS announces a new era of leadership with President Leticia Machado and new board member Adrian Gomez. Read about the commitment to groundbreaking Nemaline Myopathy research.| A Foundation Building Strength
Recap the transformative SciFam 2025 conference! Learn about Nemaline Myopathy research breakthroughs, gene therapy updates, and how the NM community is building strength together.| A Foundation Building Strength
Join AFBS's "100 Starts with One" campaign to contribute to a groundbreaking NM research data platform powered by CZI and Citizen Health. Securely share your medical records to accelerate Nemaline Myopathy treatment research and gain personal access to your health history.| A Foundation Building Strength
Noelle Nuñez and her son Ezmile rewrite the narrative of Nemaline Myopathy (NM). A story of resilience, adaptation, and a mother-son bond that thrives despite challenges.| A Foundation Building Strength
Faces of NM: Meet Mila Giselle Davila, a 5-year-old battling Nemaline Myopathy (NM). Despite her challenges, Mila's spirit shines through. Read her story of courage, resilience, and hope.| A Foundation Building Strength
Nicole Riedie, a marketing professional with Nemaline Myopathy (NM), shares her inspiring journey of overcoming challenges and living a fulfilling life. This is a story of resilience, hope, and achieving dreams despite limitations. Learn more about Nemaline Myopathy.| A Foundation Building Strength
Follow Harneet Sandhu's journey navigating Nemaline Myopathy. Learn about her symptoms, challenges, and advocacy in this inspiring account.| A Foundation Building Strength
Alexandra Gresick, a 35-year-old living with Nemaline Myopathy (NM), shares her journey, challenges, and unwavering spirit. Learn how she thrives despite a rare disease and find resources for support.| A Foundation Building Strength
Enilton Neymakes Morais, a world traveler with Nemaline Myopathy, shares his inspiring story of resilience, language learning, and dreams of global exploration.| A Foundation Building Strength
Get the latest Nemaline Myopathy research update! Dr. Vandana Gupta's lab advances gene therapy & drug screening for NM treatments. Learn more.| A Foundation Building Strength
Unlock accessible adventures! Watch our Q&A with Cory Lee for tips on wheelchair travel, from flying to cruises and beaches.| A Foundation Building Strength
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... The post NM Awareness Month Recap: Our Impactful May! appeared first on A Foundation Building Strength.| A Foundation Building Strength
Community Spotlights| A Foundation Building Strength
Meet Liv, a resilient 13-year-old in Los Angeles navigating Nemaline Myopathy (NM) through her teen years. Learn about her experiences, challenges, love for travel, and how she's involved in NM research and the Share-A-Thon.| A Foundation Building Strength
Meet Priscilla, a determined 9-year-old in Ohio living with severe Nemaline Myopathy (NM). Discover her inspiring resilience, love for learning, and how she's participating in the NM Awareness Share-A-Thon to support research.| A Foundation Building Strength
Meet Anthony, a graphic designer from the Netherlands living vibrantly with Nemaline Myopathy. Discover his inspiring story of independence, work, travel, and how he navigates life on his own terms. Support NM awareness!| A Foundation Building Strength
Meet Audrey, a resilient 6-year-old in Texas living with Nemaline Myopathy (NM). Learn about her life, challenges, and how she's participating in the NM Awareness Share-A-Thon to support research.| A Foundation Building Strength
Meet Tessa, a bright 3-year-old in Malta living with Nemaline Myopathy, a rare neuromuscular disease. Learn about her unique challenges as the only person with NM in Malta and how she's participating in the NM Awareness Share-A-Thon to support research.| A Foundation Building Strength
Join A Foundation Building Strength's first annual NM Awareness Share-A-Thon this May! Learn how you can easily spread awareness for Nemaline Myopathy and raise funds for vital research by sharing daily social media posts. Claim your fundraising page and make a difference with every share!| A Foundation Building Strength
Events| A Foundation Building Strength
A Foundation Building Strength's team members attended the World Muscle Society Congress in South Carolina, where AFBS' Scientific Director, Gus Dziewczapolski, AFBS' Program Manager, Stacy Cossette, and AFBS' PCORI Program Coordinator, Sarah Foye, participated in this enlightening event.| A Foundation Building Strength
Learn about the research projects and studies we are funding, paving the way for regulatory approval and treatment for Nemaline Myopathy.| A Foundation Building Strength
News| A Foundation Building Strength
Explore the latest advancements in NM therapies, including gene therapy, mouse models, and robotic garments. Discover promising research progress.| A Foundation Building Strength
Our blog shares the latest in Nemaline Myopathy research, celebrates members of our community, features special events and important news.| A Foundation Building Strength
A Foundation Building Strength announces new Nemaline Myopathy research grants. Up to $100,000/year for up to 3 years for projects focused on developing effective NM treatments. Learn more and apply!| A Foundation Building Strength
Learn about the Nemaline Myopathy Biobank at Boston Children's Hospital and how you can participate in advancing NM research.| A Foundation Building Strength
Learn about the latest in Nemaline Myopathy respiratory care with this informative webinar recap featuring expert Chris Burgess. Watch now!| A Foundation Building Strength
News| A Foundation Building Strength
Scientific Advisory Board members lend their knowledge to help AFBS plot our course towards developing treatments and therapies for NM.| A Foundation Building Strength
A Foundation Building Strength outlines its 2025 itinerary for Nemaline Myopathy research, including a new natural history study, expanded resources, and the SCIFAM conference.| A Foundation Building Strength
Celebrate a year of milestones in Nemaline Myopathy research with A Foundation Building Strength! Discover breakthroughs, community initiatives, and how you can help in 2025.| A Foundation Building Strength
AFBS gathered with members of the NM Community to cheer on Team AFBS runners as they tackled the 2024 New York City Marathon!| A Foundation Building Strength
Dr. Mack's groundbreaking collaboration with Prof. Nigel Laing's team yields new 3D muscle models and insights into nemaline rod formation in NM.| A Foundation Building Strength
AFBS launched its "Building Strength Together" webinar series, providing emotional wellness support and connection to the NM community. Learn about the insightful conversations and how to get involved!| A Foundation Building Strength
Promising news! Gene therapy research for Nemaline Myopathy (NEM3) progresses with successful pre-clinical trials in mice. Learn more about Dr. Rashnonejad's innovative approach and its potential to offer hope for NEM3 patients.| A Foundation Building Strength
Promising updates in gene therapy & drug repurposing for Nemaline Myopathy. Dr. Gupta's research offers hope for improved treatments & quality of life.| A Foundation Building Strength
AFBS launches a groundbreaking NM Biobanking Program at Beggs Lab to accelerate research, empower patients, and develop new treatments.| A Foundation Building Strength
