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
Life as we know it
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
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
6.14.22 Lou Gehrig Day Success
Lou Gehrig Day was entirely too much fun. We had a great turnout and got to meet other pALS in the fight. I'm always proud of this community, the love and support that flows constantly is good for the soul. Mark your calendars for June 2, 2023 for the 3rd Annual Lou Gehrig Day. Lou … Continue reading 6.14.22 Lou Gehrig Day Success
5.11.22 Serenity Now
Friday was clinic day and it was a marathon. Mah and I left Hico at 7AM and got back at 5PM. Not how I'd prefer to spend a Friday but we're going to discuss how to approach the day from a different perspective. Instead of complaining about a 6AM alarm, I'm choosing to celebrate that … Continue reading 5.11.22 Serenity Now
5.3.22 Lou Gehrig Day with the Texas Rangers
Last year was the first annual Lou Gehrig Day celebration. Since the Rangers were on the road and I’m extra, Jennifer and I flew to Denver to celebrate. Thanks to the Hilliard family I got to do a pregame interview with AT&T SportsNet RM and Marc Stout. And thanks to my favorite Morby’s we got … Continue reading 5.3.22 Lou Gehrig Day with the Texas Rangers
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