6 years ago today I posted the following picture on social media. I hadn’t yet announced my diagnosis, hadn’t even grasped the reality of what was happening, just knew it was going to an important reminder for the days to come. Now, we’re 6 years in and life is crazy because of 2020, pandemic, divorce, … Continue reading 1.20.21 Celebrating Life
ALS – SunnyStrong
Amytrophic Lateral Sclerosis or Lou Gehrig’s Disease, SunnyStrong is our team for surviving life with this horrible disease
1.12.21 Super Bowl Squares
It’s that time again, Super Bowl! This will be our third year, I think, to do them and it’s always fun to have y’all join us. Proceeds from this fundraiser will kick off our efforts to attend the International Symposium on ALS/MND in Basel, Switzerland. Assuming the world gets it’s act together and the Symposium … Continue reading 1.12.21 Super Bowl Squares
1.4.21 4 Years O’Bloggin’
Yesterday was my 4 year blog’oversary! This little pet project has come a very long ways from it’s humble beginning. Last year, this blog was viewed in more than 90 different countries - I don’t think I can name that many countries. We have also surpassed the 100k views mark which just blows my mind. … Continue reading 1.4.21 4 Years O’Bloggin’
12.30.20 Death Becomes Her
Easily one of my favorite movies, fyi. When I got my diagnosis, I was given lots of resources, people to meet, and decisions to make. The doctors, the ALS Texas staff, and loving friends made sure I was covered. Even after almost 6 years, it’s easy to get back to that overwhelmed state. One thing, … Continue reading 12.30.20 Death Becomes Her
12.16.20 Guilty By Association
I've had the honor of serving as a Patient Fellow for the International Symposiums on ALS/MND in both Glasgow and Perth. This Fellowship is about increasing the voice of people with ALS/MND at the Symposium sessions and following up with patient-centric recaps. This year's symposium was held virtually which opened many opportunities, specifically the increase … Continue reading 12.16.20 Guilty By Association
12.8.20 Big Day! Huge Day!
Past, Present, Future: The Journey to Advance Innovations in ALS Sponsored by The renowned faculty will take us on a journey through time as they discuss how innovation has paved the way toward even greater discoveries to come.Highlights of the program include:PAST: Evolution of ALS diagnostic criteria and creation of a toolkit that can be … Continue reading 12.8.20 Big Day! Huge Day!
12.4.20 Jokes On Me
I stole this picture from Cathy as it adds to the validity of the story. We were in Perth and the weather was as close to perfect as it gets for me. We were discussing the next symposium set for December 2020 in Montreal. I asked Bronson to look up the current weather in Montreal … Continue reading 12.4.20 Jokes On Me
12.3.20 30th Annual International Symposium on ALS/MND in Perth
So, guess what? I never posted my notes and take aways from the conference last year. With this year's symposium kicking off next week, there's no time like the present. I know we discussed some of the fun highlights of the trip, but I'll follow up this post with anything that might have been left … Continue reading 12.3.20 30th Annual International Symposium on ALS/MND in Perth
11.12.20 Pity Party for One
"Grief turns out to be a place none of us know until we reach it." - Joan Didion I've been educating myself on grief, recently, and it's exhausting. Turns out that I never grieved my diagnosis, not really. It helped that I fell in love with a redheaded golfer, married him, then got divorced. The … Continue reading 11.12.20 Pity Party for One
10.2.20 Last Call for SunnyStrong Shirts
Last call for SunnyStrong shirts! Order here. The Walk to Defeat ALS in Hico is 10.31
