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P.O. Box 2041
Ponte Vedra Beach, FL 32004 USA
The Joshua Frase Foundation (JFF) is a non-profit organization whose mission is to support ongoing medical research in hopes of finding a cure for myotubular myopathy and centronuclear myopathy (MTM-CNM). JFF also provides monetary and emotional support to families who are affected by congenital myopathies. Myotubular myopathy is a rare muscle-wasting disorder that occurs in three forms based on severity, inheritance, and symptoms. X-linked myotubular myopathy, the most severe form, is generally present at birth or occurs in infancy. Autosomal recessive myotubular myopathy is a less severe form that usually occurs during infancy or childhood. The least severe form, autosomal dominant myotubular myopathy, usually presents between the first and third decades of life and is slowly progressive.
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