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LoveLiv 2017

For its fifth annual fundraiser benefiting A Foundation Building Strength (AFBS), LoveLiv once again put on a Soul Cycle ride! Thanks to the amazing support of the community, LoveLiv 2017, has so far raised over $70,000! We are so grateful to everyone who participated, contributed, and donated. Such generosity and engagement gives us the hope and resources to find treatment for Nemaline Myopathy.

A Foundation Building Strength (AFBS) remains the only non-profit worldwide dedicated to finding treatment for Nemaline Myopathy, a rare muscle disease that Liv has. People with NM, including Liv, generally cannot eat, breathe and walk on their own. Life expectancy is greatly reduced due to respiratory complications. Although Liv has made great strides, she just turned 5 years old and still cannot walk or crawl, and relies on a feeding tube to manage her fluid intake. Like so many with NM, her speech is affected by severe muscle weakness in her mouth.

Over the summer, AFBS board members met with the world’s leading NM and congenital myopathies researchers. Identifying promising scientific technologies and specific areas of need, AFBS recently put out a call to the scientific community. Muscle disease investigators from around the world sent in proposals that range from exploring small molecules, to the latest gene therapies, to cutting-edge gene editing. Our scientific advisory board is currently reviewing these proposals, and with your help in the upcoming weeks, select research projects will launch this year.

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