Living with ALS is exhausting. Traveling with ALS is a tiredness beyond comprehension. Being the caregiver for someone with ALS who is exhausted and traveling is equivalent to cafeteria full of kindergarteners crying and helpless. Insert: Dr Bronson Lester In order for me to show up, interact with others, represent Her ALS Story and effectively … Continue reading 10.22.24 Freeloading Friend
Awareness
9.24.24 Montreal 2024
2018 - Glasgow 2019 - Perth 2020 - Virtual 2021 - Virtual 2022 - Virtual 2023 - Basel 2024 - Montreal Lucky year #7 is taking us to Canada! Using my voice and experience to keep patients in the conversation at this high level of science has been a top priority of my journey with … Continue reading 9.24.24 Montreal 2024
9.16.23 FaceTime
I haven’t been the best at blogging lately. Hopefully I’ll rectify that soon, but I wanted to let y’all know about two upcoming opportunities for some good facetime together. Fish Fry & Beer Saturday, September 23rd 12-4 PM McFly’s Pub - 6104 LTJG Barnett RD, Fort Worth, TX 76114 RSVP Here Fun In The Sun(ny) … Continue reading 9.16.23 FaceTime
4.26.23 2nd Annual Fight ALS Film Fest
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
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
SunnyStrong 