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
Her ALS Story
1.14.24 Super Bowl Squares
It’s almost my birthday which also means it’s time for Super Bowl squares! There has been confusion in the past about how to participate so I wanted to share a handy dandy how to guide: Start at Sunnystrong.com Select SunnyStrong Store from the drop down menu Select Super Bowl Squares Board, a new board will … Continue reading 1.14.24 Super Bowl Squares
12.12.23 Sucker Punching Nightstand
Ok, let’s get the obvious part out of the way. On 12.7 we got up EARLY to attend the pre symposium breakfast session and while Bronson Lester was getting ready, I was stretching on the bed and ended up finding the nightstand with my face on the way to the ground 🤦🏻♀️ Not the souvenir … Continue reading 12.12.23 Sucker Punching Nightstand
12.11.23 Home Again
We made it back safely from Switzerland. When I say “Thank You”, I mean it in a way that words fail to convey the enormity of the emotions behind the sentiment. This trip was life changing, hopefully not face changing, and I’m looking forward to sharing all of it with you. They say it takes … Continue reading 12.11.23 Home Again
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
1.21.23 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
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