“Each small step he takes feels like a giant leap forward.” Living with Nemaline Myopathy is not easy, but families facing it show a resilience that is nothing short of inspiring. Through ...

Researchers at Johns Hopkins University School of Medicine have identified a subgroup of patients with necrotizing myopathy who have a novel autoantibody specificity that makes them potential ...

Mackenzie Hurt, an Arizona child living with a rare muscle disorder, recently experienced a dream trip to Florida thanks to the Sunshine Foundation. Mackenzie, who has Congenital Myopathy ...