Living Beyond the Diagnosis

When there is only one girl in town, you date the crap out of her, and I’m headed to Rochester Minnesota to date the crap out of The Mayo Clinic.

In my last Blog I shared with you the results of endless research on Mesenchymal Stem Cell Therapy for Multiple System Atrophy (MSA). I started on https://clinicaltrials.gov/ after hours of searching, just to find that resource. I began with a pool of over 175 trial candidates. That’s right 175! I read each page, the whole page to start with, then I learned how to “peruse” the page for highlights to speed things up. I used filters to for the 3 phrases my Medical Team suggested: Mesenchymal, Interventional, and Alter the course of the Disease. It led me to these 5 possible trials:

1. Randomized Double-Blind Placebo-Controlled Adaptive Design Trial Of Intrathecally Administered Autologous Mesenchymal Stem Cells In Multiple System Atrophy
2. Study of ATH434 in Participants With Multiple System Atrophy
3. A Study of TAK-341 in Treatment of Multiple System Atrophy
4. Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of ION464 Administered to Adults With Multiple System Atrophy (HORIZON) (HORIZON)
5. GDNF Gene Therapy for Multiple System Atrophy

I chose #1 at The Mayo Clinic. Let’s talk about a few of my reasons.

• Because it was specific to MSA. Not all were.
• Because my Neurologist suggested Spinal Injection & Autologous Stem Cells, which it has.
• Because it was in the USA and at The Mayo Clinic. Their reputation preceded them.
• Because it was Phase 2 and Phase 1, according to my Team, was very encouraging.

NOTE: It also helped that when I consulted Dr Tagliati about this he said “Eric, if you were my Brother, I would send you to The Mayo Clinic”.

I reached out, via email, to Dr Singer and his Trial Coordinator Tonnette at The Mayo Clinic. They were very responsive. We arranged to send all my medical records to Dr Singer for his evaluation and 2 days later came the invite to visit Rochester. The reason for the first visit will be to run yet more tests, evaluate my place in the evolution of the disease, and harvest my Stem Cells. It will take between 6-8 weeks to complete the preparation of the Stem Cells for injection. Which means, I will return for my 1^st injection, around Xmas or New Years. Winter in Minnesota, Yay!

Come Nov 1^st, this Blog will turn into a type of Diary. Chronicling the visit(s) to the Mayo Clinic, and keeping track of my progress. So, I will try to fill the pages with information and experience I have acquired since April of 2022 until then.

“Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.” – Emily Dickinson