Voices Across America

ALS and a better life for my son


State: Illinois
Congressional District: IL10


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.

Share This Story

Share on facebook
Share on twitter

Find More Stories

Browse the map or filter by:

Click on pins to view stories.


Get the most from every Story

Find A Compelling Patient Story

Share it on social media.

Share Your Story On Our Network

Share your insights, challenges and what keeps you going.