A Foundation Building Strength

A Foundation Building Strength is the only 501(c)3 organization solely dedicated to finding treatments for Nemaline Myopathy, while also providing support and resources to the NM community. Nemaline Myopathy (NM) is a rare disorder that primarily affects skeletal muscles. Muscle weakness (myopathy) is typically most severe in the muscles of the face, neck, body core, and other muscles close to the center of the body (proximal muscles), such as those of the upper arms and legs. This weakness can usually improve to some degree with physical therapy, but may worsen due to growth spurts, injuries or surgeries, poor nutritional status, gaining too much weight, mental health problems, sedentary lifestyles, a medication or therapy, another medical condition, becoming pregnant, and/or the aging process in adulthood. AFBS works to address issues for our NM families from all angles, including advancing research, providing information about care, offering family support groups and ways to connect, and creating opportunities for in-person interaction and education at conferences. Working towards our mission, we fund research aimed at understanding protein function and disease progressions, prerequisites to regulatory approval such as natural history, gene expression and editing such as CRISPR and Cas9, exon skipping, gene therapy and related approaches. We are highly driven to efficiently and effectively move research progress forward and have done this through funding only the most promising studies, bringing together top scientists around the world to collaborate and making connections with other rare disease researchers, pharmaceutical and biotech companies.
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