2.23.23 Sunny Goes to DC

I’m failing y’all in the weekly blogs, so get ready for some double doses. Last week I got the opportunity to go to Washington DC in the name of ALS advocacy. I was able to attend because of generous support from the sale of Super Bowl squares and winners who donated their winnings back. Thank … Continue reading 2.23.23 Sunny Goes to DC

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

6.20.22 Kendra Scott Giveback Party

I’d like to personally invite you to contribute to the Her ALS Story Wellness Retreat by shopping our Kendra Scott Giveback event.  During our party, 7/20 - 7/22, 20% of sales online and in store using the code: GIVEBACK-CGOSH will go to offset various costs of the retreat.  This coming fall, we are organizing a … Continue reading 6.20.22 Kendra Scott Giveback Party