5.26.21 We Can’t Wait

Yesterday I had the opportunity to give my patient testimony to the FDA. It was recorded in case you missed it.

“In the immediate future, we will be asking the FDA to recommit to its 2019 ALS clinical trial guidance, to explain how it has implemented it, and how it plans to get effective treatments to people with ALS faster.We will be asking for a detailed report on these issues with a deadline.”


This is part of a larger conversation including appropriations, new legislation, and bipartisan support. This is where your voice matters. Please use this link to contact your Representative and Senators about ACT for ALS.

“The Accelerating Access to Critical Therapies for ALS Act will make $100,000,000 available each fiscal year from 2022-2026 to build new pathways to fund early access to ALS investigational therapies, accelerate ALS and neurodegenerative disease therapy development through a public-private partnership, and increase research on and development of interventions for rare neurodegenerative diseases through a new Food and Drug Administration (FDA) research grants program.”


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