Chapter 17: Swinging For The Fences

It’s now or never as an important loose end is finally tied.

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Did you ever wonder what happened with that promising stem cell trial Jamie and I worked so hard to get into? Feels like a lifetime ago we celebrated that incredible moment.

In the end, we felt it wasn't adequate to save my life. The science just wasn't strong enough to risk a year of forgoing other therapy options (however few and speculative they may be). The stem cell avenue had the benefit of no placebo and some Phase 1 evidence that it could slow my progression. It would have been a safe bet. But the upside just wasn't there. So we went a different direction.

Right now I can't disclose any details about this trial in Boston that I recently got into. But Jamie and I can reveal our gratitude and excitement for the opportunity. The study has been described to us as "swinging for the fences." And that suits us just fine. George Brett would certainly be proud of our approach (More on him soon...).

KMBC and our own personal ALS champion, Keleigh Gibbs, did a nice feature on my journey and the challenges the broader ALS community faces. But before watching, please remember that while I was lucky to have options for experimental treatments, there are so many more who are left out. And THAT is why we need #ExpandedAccess. Whenever ACT for ALS is re-introduced in congress you can bet your bottom dollar you'll be hearing from yours truly!