He Was Given 6 Months to Live. Then He Changed D.C. (Getting ALS research money)

Alvin2

The good news is patients don't die the bad news..
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He Was Given 6 Months to Live. Then He Changed D.C.

Brian Wallach was diagnosed with ALS the day his daughter came home from the hospital. In the time since, he’s radically changed how medical advocacy works and how the government approaches medical research.
The group helped score some early victories, including getting the Pentagon to double its investments in ALS research from $10 million to $20 million, and then to double it again to $40 million. They created an ALS Caucus on the Hill. Brian personally delivered a letter and accompanying stack of paper signed by 10,089 ALS activists to the FDA demanding it publish long-promised, revised guidance on how ALS clinical trials could be designed. The agency subsequently did it.
https://www.politico.com/news/magazine/2022/01/14/brian-wallach-als-advocacy-527094

We need to find a way to replicate this for ME.