It’s been an exciting week leading up to the kickoff of ALS Awareness Month! Yesterday the FDA approved a new medication for ALS called Qalsody. It’s the fourth ever approved drug and the first for gene specific mutations of ALS. May is ALS Awareness Month in the US and, in partnership with Her ALS Story, … Continue reading 4.26.23 2nd Annual Fight ALS Film Fest
Awareness
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
10.14.22 Y’all Ball
Instead of doing an ALS walk this year we’re hosting the Y’all Ball. I cannot tell you how excited I am to party with everyone in Hico! Games, silent auction, trivia, snacks and pizza - what more could you want? Oh and it’s BYOB. Honestly I didn’t know what “thrift store chic” looked like until … Continue reading 10.14.22 Y’all Ball
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
9.29.22 Girl Gang
By now y’all should know about my girl gang, Her ALS Story. We spent some time together in Madison, WI and it was everything we dreamed it would be. 15 women diagnosed with ALS before the age of 35 came together from around the country for a few days of love, laughter, support, and all … Continue reading 9.29.22 Girl Gang
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
8.22.22 August Clinic Update
Do you ever tell people something in your head but forget to hit send? I've always been at a hefty level of insanity, but I swear it’s been worse since I had covid in January. I have MANY blog posts to purge from my head and I plan to get those out to you over … Continue reading 8.22.22 August Clinic Update
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
SunnyStrong 