Voices Across America

ALS and a better life for my son

Michael

State: Illinois
Congressional District: IL10

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Diseases

Genetic Disease

Issues and Challenges

Michael has encountered: Access to Expert Providers

My Story

I have ALS (... a death sentence) and my cause is a mutated gene. Today, and since just before my diagnosis, one therapy exists that targets the specific gene. The therapy has been in a Phase 1 clinical trial the entire time and I have been on the waitlist (and declining)... a mere 80 people have been included and the "issue(s)" are allegedly safety; some efficacy is also alleged.

Regardless, requests on my behalf from at least 5 individuals to extend compassionate use, including 3 who KNOW those in charge of the study, have all been denied. By the end of 2020, I will likely lose my useful remaining arm. No competing targeted therapy is expected before mid 2021, too late for me. Biogen CANNOT claim safety to someone with a death sentence!

My Motivation and Inspiration

My pupose - to positively impact the financial lives of others as much possible.

Specifically, I have a son and I want to help make a better future for him (and everyone else.)

I have published 2 books on policy / economic growth / opportunity equality. I have a new podcast, do interviews and health investment and wealth managers ("day job") get better at what they do.