For its fourth annual fundraiser benefitting A Foundation Building Strength (AFBS), LoveLiv will once again have a Soul Cycle ride! 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 4 years old and still cannot walk or crawl, and relies on a feeding tube for some of her nutrition. Like so many with NM, her speech is affected by severe muscle weakness in her mouth.
With your help, we can find treatment to better Liv's life and those with NM. AFBS is seeking to fund a gene therapy study for Nebulin based Nemaline Myopathy, targeting the same mutation Liv has. If this study is successful, Liv could have treatment in a few years. This is one of the most exciting proposals we have received and we need your help!