A FOUNDATION BUILDING STRENGTH INC
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Mission Statement
A Foundation Building Strength for Nemaline Myopathy has a mission to advance the science of treating myopathies while supporting the families affected by Nemaline Myopathy.
About This Cause
Nemaline Myopathy (NM), a congenital neuromuscular disorder that causes muscle weakness. About 30% of kids diagnosed with NM die before turning 10 years old, and many of those that do survive live difficult lives, requiring assistance from wheelchairs or breathing machines. Unfortunately, because NM is so rare, funds raised for researching a possible cure are extremely limited. A Foundation Building Strength was created by Marc and Dana Guillet with “a mission to advance the science of treating myopathies while supporting the families of NM with information, resources and solutions.” They hope to lend a hand in providing better lives to those diagnosed with NM, including their own daughter Ava.