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
Author: sunnystrongblog
4.10.23 Remembering Bailey
It’s been one week since my friend passed away. After some reflection time yesterday, I have found some peace around the loss. I still have moments of anger and deep sadness but I’m coming to terms with the fact that I was lucky to love her while she was here. I remember the first time … Continue reading 4.10.23 Remembering Bailey
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
1.21.23 Actin’ Up
Back in April, Mah and I went to Maine to meet some of my HAS girls and drink some beer. It was there that I have a clear, very loud memory of Paul Kessler telling me “you gotta come to our house, we have an elevator!” So to celebrate my 8 year diagnosiversary I took … Continue reading 1.21.23 Actin’ Up
1.13.23 Anti-hero
Nothing screams Sunny quite like starting the new year on the 13th day, and a Friday the 13th at that. If I’m going, I’m going to be late, it’s just who I am at my core. Have no fear, the chaos continues. The first 13 days of of this year have caused me to step … Continue reading 1.13.23 Anti-hero
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
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