Aaron, Jack, and I were honored to help represent ALS One at the Red Sox ALS Awareness Game last night. We joined four ALS organizations, 25 families affected by the disease, Mass. Governor Charlie Baker, and Dr. Merit Cudkowicz of the Healey Center for ALS at MGH, among others during the pregame ceremony. As a… Continue reading RED SOX ALS Awareness Game
Last summer, Aaron and our friends Bender and Eric started messing around playing some music together, and before we knew it they formed a band. We and the Benders would switch off hosting duties each weekend and we'd spend our days lounging by our respective pools for a few hours before the guys would disappear… Continue reading Worth the Wait!
I got my power wheelchair just about the time the pandemic hit last year. Since I hadn't been out in public a whole lot over the last 14 months or so, I hadn't really used the chair much outside the comfort and familiarity of my neighborhood. Last night I ventured out into the actual world… Continue reading A Night Out, A Band, and Wine, Oh My!
It was so great to get down to Marshfield yesterday for ALS One's annual polar plunge! After more than a year of lockdown and COVID restrictions and isolation, people were so ready for this. It was freeeeezing cold, but so awesome to see everyone and cheer on those who braved the frigid waters of the… Continue reading ALS One Polar Plunge 2021
We started our Rise Against ALS initiative in early 2021 with an eye toward advocacy and awareness, and with the specific mission of raising funds for ALS ONE and the Healey Center for ALS at Massachusetts General Hospital through various fundraisers throughout the year. Stay tuned for upcoming events and new merch. Thank you for… Continue reading Our Mission
It has taken me over a week to fully recover from the epic time that was had here at Casa de Strojny over the weekend of the 19th-21st. That had promised to be a great weekend anyway because Nancy Lee Grahn was hosting a Zoom fundraiser for ALS One, which I was super excited about.… Continue reading Epic Weekend
Back in the early-ish days of the pandemic, a pretty cool thing happened in the midst of the craziness. Because everything in the world was basically shut down, people got all inventive in terms of connecting with their fellow humans. Zoom calls became the norm. For me, Friday nights became Friends and Family Fridays. It… Continue reading General Hospital Stars Zoom for ALS
I haven't physically been to clinic at Mass General in a year, thanks to COVID. Last April and July I had virtual visits with Dr. Berry via Zoom. In September and December a nurse from the ALS House Call program came out to the house for an in-person visit. She came out for her third… Continue reading ALS House Call Visit
I turned 49(!) yesterday. For my birthday last year, my friends and I went to see a kick-ass band at a local casino. We had an amazing time, but we were woefully unaware that just one week later the world would shut down. We had no idea that we wouldn't get to gather again as… Continue reading Anniversary of My Existence
I needed a little color in my life. Between being locked down forever and the suck-fest that is winter in New England, I felt like I needed to spice things up a bit. So at 48 years old, I decided a pop of color was just what the doctor ordered. I love it...and it mortified… Continue reading I Did a Thing…
Rise Against ALS! 