1.27.23 Chariot of Choice

Settle in, friends. Lots to see and learn here. First, SunnyPalooza. Birthday’s are just more fun when they fall on Saturday, amirite? So this year for the big 3-6 we’re throwing a full blown multi event par-tay! ALS One announced that they were bringing back the 50 in 1 Bar Crawl for ALS and Team … Continue reading 1.27.23 Chariot of Choice

10.6.22 New Drug

The FDA announced approval on Thursday of a new drug called Relyvrio. This is especially exciting because this is only the third approved medication to fight ALS. Tuesday I realized it had been 5 years since I started Radicava and after sharing my original post I’ve learned just how much I confused everyone. My sincerest … Continue reading 10.6.22 New Drug

8.26.22 ICER Testimony

Last Friday I got the opportunity to contribute my patient testimony durning the public comments session of the ICER Midwest CEPAC Public Meeting on AMX0035 and Oral Edaravone for Amyotrophic Lateral Sclerosis. This is always something I enjoy doing because I want the people making decisions about ALS to know who those decisions impact. From … Continue reading 8.26.22 ICER Testimony

7.29.22 Week 5 Fight ALS Film Festival

TransFatty Lives Watch Film Watch Film Discussion Enlightenment by Shotgun TransFatty Lives was the best, most epic film to wrap up ALS Awareness Month and the Fight ALS Film Festival. If you haven't watched this film yet, go now and watch it. HURRY! "It is an honest film, and Patrick is funny and he has … Continue reading 7.29.22 Week 5 Fight ALS Film Festival

7.28.22 Week 4 Fight ALS Film Festival

The Theory of Everything Watch Film Watch Film Discussion Meet Katrina Hawking This discussion was a real treat as Katrina Hawking told stories of meeting her father in law and traveling with someone famous. I learned so much about this person who was larger than life and also Granddad. I just found out Stephen Hawking … Continue reading 7.28.22 Week 4 Fight ALS Film Festival