Nemaline Myopathy Global Community

Nemaline myopathy (NM) is the most common of all congenital myopathies, but is still considered a rare muscle disorder. Finding good information about NM has not been easy, but we are making improvements. Education and awareness efforts about NM care, how to organize community efforts, and what resources are available to help have recently increased due to grass-roots efforts by the Get Counted team which consists of parents of affected children and adults living with NM all around the world. This channel will further the great efforts of so many good people. For almost 5 decades, no one was asking for treatment development, that is, until A Foundation Building Strength for Nemaline Myopathy (AFBS) was established. AFBS is the first and only foundation specifically seeking to support finding a treatment or cure for NM and they are currently funding every significant research project focused on NM. Together we can!