Co-founder
Voices for ALS
Michelle Lorenz is a patient advocate and co-founder of the non-profit, VOICES FOR ALS.
With 25 years of overseeing catastrophic injury litigation, Michelle brought her advocacy expertise to the Rare Disease community where she led the grass roots effort to pass the ACT for ALS, one of the top 100 most cosponsored bills in the last half century. The bill provides $500 million to fund research grants for rare neurodegenerative diseases and Expanded Access for people battling ALS. Michelle also serves as a Research Ambassador for the Northeast ALS Consortium, and a member of the Expert Advisory Board for Synapticure, a tele-neurology company founded by Brian Wallach and Sandra Abrevaya, of I AM ALS.
While her advocacy has focused on ALS and health policy, she also has personal experience with a rare disease called amyloidosis, which took the life of her mother. As a Latina, her amyloidosis was likely related to her ethnicity, misdiagnosed for years, and possibly associated with toxic exposures due to environmental injustice. Now her aunt is also suspected of having a different inherited form of amyloidosis. While amyloidosis is a fatal, rare heterogeneous disease with 30 subtypes, two disproportionately impact people of color. Her presentation will use those two subtypes, ALECT2 & ATTR (v122i), to exemplify some barriers and offer some health policy changes as well as common sense solutions to increase diversity in clinical trials for Rare Diseases. like ALS and Amyloidosis.
Thursday, March 23, 2023
9:30 AM – 10:30 AM EDT