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News and press releases about the Joshua Frase Foundation and its efforts behind CNM/MTM

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Mon, Aug 18, 2014

The Will to Live and the Strength for a Cure

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles...
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Thu, May 16, 2013

Restoring muscle function in a rare, devastating disease

This two-part series examines two potential treatment approaches for myotubular myopathy, a genetic disorder that causes muscle weakness from birth.
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Tue, Mar 12, 2013

Registry Seeks Participants with Congenital Muscle Disorders

Disease registry seeks input from people with congenital muscular dystrophies, congenital myasthenic syndromes or other congenital muscle disorders, including those with no...
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Tue, Jan 22, 2013

Enzyme Replacement Therapy Shows Promising Results in X-Linked Myotubular Myopathy

X-linked myotubular myopathy (XLMTM) is a severe muscle disease caused by an absence of a protein called myotubularin.  There is currently no treatment for this disorder, and...
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Tue, Nov 06, 2012

What's Making Adam Sick?

For more than a decade, doctors have been trying to figure out what’s behind the weakness and fatigue that caused 11-year-old Adam Foye to miss 60 days of school last year....
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Thu, Dec 01, 2011

The Blood Alliance helps The Joshua Frase Foundation

The Blood Alliance is donating $1 to The Joshua Frase Foundation for each blood donation made at any of its donor centers during December to honor the brief life of Joshua...
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Wed, Jun 15, 2011

New Development of Treatment for Myotubular Myopathy Initiated by Joshua Frase Foundation

The Joshua Frase Foundation, a Jacksonville-based nonprofit, announces its collaboration with Généthon, a French biotherapy lab, and Wake Forest University School of...
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Mon, Jun 13, 2011

Hold Onto Your Dreams

Joshua was born with a rare muscular disease, Myotubular Myopathy, and he wasn’t supposed to live for more than a day but he beat the odds and lived till he was...
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Our recent campaign to increase participation in our Family Registry was published in MDA Quest Magazine, and can be seen below.