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
We are the leader in funding Nemaline Myopathy research, dedicated to finding treatments for the rare muscle disease.| 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
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 rare congenital muscle disease. 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 to raise funds for NM research.| A Foundation Building Strength
May is Nemaline Myopathy Awareness Month! Join the AFBS community for events, giveaways, educational resources, and more throughout the month, culminating in Nemaline Myopathy Awareness Day on May 31st.| A Foundation Building Strength
A Foundation Building Strength (AFBS) is excited to support smaller, regional gatherings for NM families to stay connected around the world. In 2023, there are currently gatherings being planned in the following locations: Palo Alto, California São Paulo, Brazil (virtual, in Portugese) Kungsbacka, Sweden (in Swedish) Charlotte, North Carolina New York City, New York Are you...| A Foundation Building Strength
At A Foundation Building Strength, we are committed to making a positive impact in the lives of individuals and families affected by Nemaline Myopathy (NM), a rare muscle disorder causing muscle weakness. This summer, we’ve had the incredible opportunity to bring NM families together through a series of Regional Gatherings. These events not only provided...| A Foundation Building Strength
We are always looking to partner with scientists researching Nemaline Myopathy. Submit you application to be considered.| A Foundation Building Strength
A new stem cell model of Nemaline Myopathy (NM) offers hope for effective treatments. Researchers can now test therapies in a dish, paving the way for a brighter future for NM patients.| A Foundation Building Strength
Exciting progress on a new approach treating Nemaline Myopathy! Dr. Afrooz Rashnonejad is developing a gene therapy for ACTA1-related NM/NEM3.| A Foundation Building Strength
We're leading the charge in finding treatments for Nemaline Myopathy. See how AFBS funded Nemaline Myopathy exosuit research is revolutionizing mobility.| A Foundation Building Strength
Meet our team of scientists, researchers and doctors dedicated to advancing research for Nemaline Myopathy.| 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