A Marathon, Not a Sprint: Former Pro Athlete Alexander Lundskog runs 26.2 Miles for Nemaline Myopathy

A Marathon, Not a Sprint: Former Pro Athlete Alexander Lundskog runs 26.2 Miles for Nemaline Myopathy

For a decade, Alexander Lundskog measured his athletic life in two furious laps around a track. Representing Sweden on the professional circuit, the Gothenburg native specialized in the 800 meters, an event built on razor-thin anaerobic margins, lactic acid tolerance, and explosive, sustained speed. He stepped away from professional running two years ago, having pushed…

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Redefining the Finish Line: Meet Eric Tozer

Redefining the Finish Line: Meet Eric Tozer

Eric Tozer is no stranger to the outer edges of human endurance. After being diagnosed with Type 1 diabetes in 2006, the now-42 year-old from San Diego turned to long-distance sports, conquering multiple Ironman triathlons and running across the United States in a 15-day relay. In 2019, he tackled the World Marathon Challenge, becoming the…

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Miles with Meaning: Meet Lucas Ross

Miles with Meaning: Meet Lucas Ross

For Lucas Ross, athletic challenges have always been part of life. Growing up in Palo Alto, California, he spent years on the move playing competitive lacrosse and basketball, later testing his endurance with casual distance runs, a 10K, and a half marathon. But as he entered his senior year at Southern Methodist University (SMU) in…

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Elevating Patient & Caregiver Voices: New Multinational Study Publication Sheds Light on Nemaline Myopathy

Elevating Patient & Caregiver Voices: New Multinational Study Publication Sheds Light on Nemaline Myopathy

In rare disease research, data only tells part of the story until it includes the lived experiences of those who navigate the condition every day. That vision took a leap forward with the publication of “Nemaline Myopathy Patient and Caregiver Perspectives: A Multinational Cross-Sectional Study” in Neuromuscular Disorders. Made possible through research funding from A…

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Sunrises, Mountain Trails, and 26.2 Miles for NM: Meet Tiffany Hotchkiss

Sunrises, Mountain Trails, and 26.2 Miles for NM: Meet Tiffany Hotchkiss

For Tiffany Hotchkiss, running has long been an anchor in a full, fast-moving life. Long training blocks mean fitting high mileage around a full-time career, regular travel, and everyday family routines. Yet whether she is logging early miles before the workday begins or chasing the fading light at dusk, she finds clarity in the rhythm…

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A Cousin’s Promise: Meet Taylor Lantz

A Cousin’s Promise: Meet Taylor Lantz

When Taylor Lantz laces up her running shoes before dawn on Saturday mornings, she takes the subway all the way uptown to West 168th Street, meets her closest friends, and runs the entire length of Manhattan back down to East 3rd. It is an ambitious route through the city she now calls home, but on…

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Advancing Nemaline Myopathy Gene Therapy: Inside AFBS’s Latest Preclinical Milestones

Advancing Nemaline Myopathy Gene Therapy: Inside AFBS’s Latest Preclinical Milestones

At A Foundation Building Strength (AFBS), our core mission is driving the scientific discoveries needed to develop effective treatments for Nemaline Myopathy and finding viable genetic therapies for rare neuromuscular disorders requires innovative engineering alongside persistent investment. Through targeted grant funding and research partnerships, AFBS bridges the gap between early laboratory concepts and translational pipelines….

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Ask Your Care Team to Document Your Nemaline Myopathy Diagnosis to Power Our Search for Effective Treatments

Ask Your Care Team to Document Your Nemaline Myopathy Diagnosis to Power Our Search for Effective Treatments

When we think about advancing research for Nemaline Myopathy (NM), we often focus on the massive milestones, like clinical trials and laboratory breakthroughs. But a huge amount of progress actually starts with a simple string of characters in your medical chart: G71.21. In 2021, dedicated community advocates successfully secured a unique International Classification of Diseases…

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Research Update: 3D Engineered Muscle and AI Accelerate the Search for Nemaline Myopathy Treatments

Research Update: 3D Engineered Muscle and AI Accelerate the Search for Nemaline Myopathy Treatments

Historically, the path to developing treatments for Nemaline Myopathy (NM) has faced two significant roadblocks: a limited understanding of how the disease impacts muscle cells beyond initial genetic mutations, and a shortage of versatile lab models to rapidly test new therapeutic approaches. An AFBS (A Foundation Building Strength) funded international collaboration led by Dr. David…

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