LoveLiv is an annual fundraiser for A Foundation Building Strength, the only nonprofit with the singular mission to find treatment for this rare disease.
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.
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.
Your donation directly supports research to find treatments and improve the lives of children affected by nemaline myopathy.
Make a Difference TodayJoin us for our annual fundraising events that bring the community together to support research for nemaline myopathy.
Join Team LoveLiv for the official shakeout run of the ASICS Los Angeles Marathon! Run with purpose to support nemaline myopathy research.
Please do not register on your own!
Contact us to join Team LoveLiv and we'll register you.
View highlights and memories from our previous fundraising events and celebrations.
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Help us fund critical research to find treatments for nemaline myopathy. Together, we can build strength and hope for children like Liv.
Donations go to A Foundation Building Strength for Nemaline Myopathy