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
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.
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.
