Myotubular Myopathy Resource Group

The Myotubular Myopathy Resource Group is a non-profit, voluntary organization dedicated to enabling affected families to exchange support, resources, and information about this rare disorder. X-linked myotubular myopathy is a rare disorder characterized by weakness of the respiratory muscles causing respiratory distress. In addition, infants with this form of myotubular myopathy are generally weak and have a loss of muscle tone causing poor sucking and an inability to swallow. Weakness of the jaw, tongue, lips, cheeks, mouth, throat, and neck muscles may also be present. The resource group is also committed to identifying affected families, educating the medical community about the disorder, working with several researchers who are attempting to locate the responsible gene, and offering educational materials including fact sheets, reports, and a regular newsletter.