1.20.21 Celebrating Life

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

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!

12.3.20 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