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
Her ALS Story
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
10.6.22 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
7.27.22 Week 3 Fight ALS Film Festival
Hope on the Horizon: An Expedition for ALS Watch Film Watch Film Discussion Meet HARK "I just hope other people don't have to go through what we went through" Quinn Ragan We've raised over $3.5 million and it has all been given to A.L.S. families. This film is a true testament to what crazy tthings … Continue reading 7.27.22 Week 3 Fight ALS Film Festival
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