• FUNDING RESEARCH TO TREAT NEMALINE MYOPATHY

  • FUNDING RESEARCH TO TREAT NEMALINE MYOPATHY

  • FUNDING RESEARCH TO TREAT NEMALINE MYOPATHY

  • FUNDING RESEARCH TO TREAT NEMALINE MYOPATHY

  • FUNDING RESEARCH TO TREAT NEMALINE MYOPATHY

LIV’S STORY

Liv has nemaline myopathy, a rare disease that affects skeletal muscles. This makes moving, eating, and even breathing very difficult.

The disease is so rare that it took nearly 7 months of constant testing and doctor’s visits to figure out what was wrong

Background

ABOUT LOVELIV

LoveLiv is an annual fundraiser for A Foundation Building Strength for Nemaline Myopathy, the only nonprofit with the singular mission to find treatment for Liv’s disease.

For its sixth annual fundraiser LoveLiv put on a Soul Cycle ride, supported by a kid-run lemonade stand at the Platform in Culver City. Thanks to the amazing support of the community, LoveLiv 2018, raised overĀ $86,000!

FOLLOW ME

NEMALINE MYOPATHY

is a group of congenital, hereditary neuromuscular disorders that cause muscle weakness, generally nonprogressive, of varying severity where severe forms show up to 66% mortality rates before the age of two. It is considered one of the most severe muscle conditions of childhood. Currently no treatments or disease modifying therapies exist for nemaline myopathy and few potential candidate drugs have been identified.

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