A Foundation Building Strength (AFBS) proudly announces a significant expansion of its Nemaline Myopathy (NM) research efforts through the launch of the Beggs Laboratory NM Biobanking Program at Boston Children’s Hospital. This groundbreaking initiative builds upon the existing AFBS-sponsored NM Tissue Repository and aims to revolutionize our understanding of NM, forging a path toward new…
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A Diagnosis, A Fear, A New Path Enilton Neymakes Morais isn’t letting Nemaline Myopathy (NM) clip his wings. The 35-year-old Brazilian from Valente-Bahia speaks five languages and dreams of traveling the world, a testament to his adventurous spirit. His diagnosis came through a muscle biopsy, and it was met with a heavy dose of fear….
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Early Signs, Diagnosis, and Medical Complexities Harneet Sandhu’s journey with Nemaline Myopathy (NM) began with early signs noticed by her mother when she was just three years old. “When I would fall while walking, I wouldn’t stand back up,” she recalls. Concerned, her mother sought medical advice, leading to a pivotal diagnosis of a muscular…
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Alexandra Gresick isn’t letting Nemaline Myopathy (NM) define her. The 35-year-old St. Louis resident wears many hats – a university employee passionate about student success, a culture and language enthusiast, and a determined individual navigating a rare disease. Her journey with NM began with a dramatic turn. A Diagnosis and a New Chapter “Hospitalization for…
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Nemaline Myopathy (NM) is a rare muscle disorder that weakens the body’s skeletal muscles. Finding effective treatments for NM has been challenging, in part due to the difficulty of recreating the disease in a laboratory setting. However, a recent research project funded by A Foundation Building Strength (AFBS) has made significant progress in overcoming this…
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𝘛𝘩𝘪𝘴 𝘪𝘴 𝘵𝘩𝘦 𝘭𝘢𝘵𝘦𝘴𝘵 𝘪𝘯𝘴𝘵𝘢𝘭𝘭𝘮𝘦𝘯𝘵 𝘪𝘯 𝘰𝘶𝘳 “𝘍𝘢𝘤𝘦𝘴 𝘰𝘧 𝘕𝘔” 𝘴𝘦𝘳𝘪𝘦𝘴, 𝘱𝘳𝘰𝘧𝘪𝘭𝘪𝘯𝘨 𝘴𝘰𝘮𝘦 𝘰𝘧 𝘵𝘩𝘦 𝘮𝘦𝘮𝘣𝘦𝘳𝘴 𝘰𝘧 𝘰𝘶𝘳 𝘶𝘯𝘪𝘲𝘶𝘦 𝘢𝘯𝘥 𝘥𝘪𝘷𝘦𝘳𝘴𝘦 𝘕𝘔 𝘊𝘰𝘮𝘮𝘶𝘯𝘪𝘵𝘺. Noelle Nuñez and her son, Ezmile, are rewriting the narrative of Nemaline Myopathy (NM). Noelle’s journey began invisibly, a condition that went undiagnosed for years, silently shaping her life. “I didn’t get…
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Mila Giselle Davila is all smiles and sunshine. At five years old, the Houston, TX resident exudes a vibrancy that transcends the challenges of living with Nemaline Myopathy (NM), a rare congenital muscle disease. But Mila’s journey began with a fight, a fight that would shape her life and the lives of those who love her most.
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The second installment in our “Faces of NM” series featuring the unique stories of members in our diverse and incredible Nemaline Myopathy community. Nicole Riedie, a marketing professional from Sherwood, Arkansas, is no stranger to adversity. Diagnosed with Nemaline Myopathy (NM) at a young age, Nicole has faced a lifetime of challenges, yet her story…
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The first installment in a series of profiles featuring the unique stories of members in our diverse and incredible Nemaline Myopathy community. Jonathan and His Foster Son Christopher Face the Challenges of Nemaline Myopathy Together Dallas, Texas resident Jonathan Roberts isn’t your average dad. He’s a respiratory therapist who formed an extraordinary bond with a…
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It’s Nemaline Myopathy Awareness Month, and A Foundation Building Strength is excited to celebrate all May long! We’re raising awareness for this rare muscle disorder and fostering connections within the NM community. Throughout the month, we have a huge variety of exciting events and resources planned to help shine a light on Nemaline Myopathy, all…
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At AFBS, we’re committed to finding treatments for Nemaline Myopathy (NM) through a diverse array of research approaches. From gene therapy to small molecules and disease management strategies, we’re investing in initiatives that hold the most promise for our community and we’re thrilled to share an exciting update on a groundbreaking Nemaline Myopathy exosuit research…
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