What a year it’s been! As 2024 comes to a close, we’re taking a moment to celebrate the incredible strides we’ve made together on the road to find treatments Nemaline Myopathy. From research breakthroughs to community building, it’s been a year of milestones and achievements. We invite you to join us in reflecting on the…
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Nemaline Myopathy Community Celebrates Team AFBS at the New York City Marathon
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…
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International Collaboration Drives New Discoveries in Nemaline Myopathy Research
Unraveling the Mysteries of Nemaline Myopathy: A Transcontinental Effort The quest to understand and treat Nemaline Myopathy (NM) has taken a significant leap forward, thanks to a powerful collaboration between researchers across the globe. Dr. David Mack and his team at the University of Washington, in partnership with Dr. Joshua Clayton from Prof. Nigel Laing’s…
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Building Strength Together: Powerful Conversations on Emotional Wellness Kick Off Webinar Series
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…
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Nemaline Myopathy Gene Therapy Research Moves to Next Phase of Pre-Clinical Trials
We’re excited to share some encouraging news on the front lines of Nemaline Myopathy research. Dr. Afrooz Rashnonejad and her team, funded by the support of AFBS, have been making strides in developing a potential gene therapy for NEM3, a form of Nemaline Myopathy caused by mutations in the ACTA1 gene. Nemaline Myopathy Gene Therapy:…
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Research Brief: Promising Updates in Nemaline Myopathy Gene Therapy and Drug Repurposing Development
Dr. Vandana Gupta and her team at Brigham & Women’s Hospital, with funding from A Foundation Building Strength (AFBS), are making exciting progress in the quest to find treatments for Nemaline Myopathy (NM). This rare neuromuscular disease affects muscle function and can significantly impact quality of life. Here’s a quick update on their recent research…
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AFBS & Beggs Laboratory Launch Groundbreaking NM Biobanking Program
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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Faces of NM: Enilton Neymakes Morais – A Polyglot Globetrotter with Nemaline Myopathy
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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FACES OF NM: Harneet Sandhu is Navigating Nemaline Myopathy with Resilience and Advocacy
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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FACES OF NM: Alexandra is Finding Strength in Every Breath
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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A Beacon of Hope: New Research Paves the Way for Effective Nemaline Myopathy Treatments
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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