Co-founder
Voices for ALS
Michelle Lorenz is a rare disease 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 co-sponsored 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. While her advocacy has focused on ALS and regulatory health policy, she also has personal experience with a rare disease called amyloidosis, which took the life of her mother. And as a Latina, she has also been a strong advocate for increasing diversity in clinical trials and ensuring equitable access to specialists at centers of excellence.
Michelle’s presentation will focus on the patient’s perspective about the need for decentralized clinical trials and will discuss how the ALS community and researchers are endeavoring to increase access in a community for whom traveling to clinical trials has been a significant obstacle.
Friday, May 30, 2025
3:00 PM - 4:00 PM East Coast USA Time