As Team Gleason’s Chief Impact Officer, and as a result of Suzanne and Kacie’s persistence (shoutout to the Marketing Team!), I wanted to talk about the recent trip I took this year, meeting with key organizations and individuals who are truly helping Team Gleason make an impact.
For the first leg of this trip, I met up with Phil Green, a member of Team Gleason’s Board, Technology Advisory Committee, A-Team, and about 4,000 other ALS border or committees who has also lived with ALS for 3 years. I flew from New Orleans to Ontario, California, where Phil lives, to fly with him to Seattle, for meetings, but more importantly, so Phil could attend his son Hunter’s last home football game.
Senior Day is a highly important day for every highschool football player, and Phil really wanted to be there. In order for Phil to make Hunter’s game, it required him to fly with his full size power chair, which he had never done before. During one of our strategy calls, Phil had mentioned his desire to make this trip, but he also mentioned his reservations and concerns about traveling with his power chair. With my previous experience traveling with Steve in my caretaking days, Phil asked if I’d be willing to come along. I said yes without hesitation, to which Phil immediately responded, “ok, let me talk to your wife (Girl Blair) to get her approval because she’s the boss.” My wife knows my love and appreciation for Phil and without hesitation, said yes.
After flying to California, I spent the night at Phil’s house to get some much needed rest for the big day we had ahead…or so I thought. At 2am, I woke up in the worst state I’ve ever been in…
I still remember the look on Phil’s wife, Jennifer’s, face in the doorway. I had seen that face before. It was the same face that Michel had after we climbed Machu Picchu and I had gotten sick. The only way I can describe the face is something like, “you can’t be sick, what the **** are we gonna do!?” Part of me thought I was dying, or had appendicitis, or had Covid, or maybe I had both Covid and appendicitis and was dying all at the same time. The other part of me thought “Figure it out Blair, we need to get Phil to his son’s Senior Day football game. Also by now, if you don’t know me well enough, you’re probably constantly worried about my mental health. For those of you that do know me well, I have A LOT of these conversations with myself in my head.
Blair in the ER in California
Around 7 PM, we got back to his home and I laid down, took a power nap, and came down at 8 PM. The first thing he said was, “you look like shit…are you gonna live?” to which I responded “are we gonna make this flight?” Phil said “Blair you didn’t answer my question. Don’t answer a question with a question.” This is Phil and me’s normal banter. I said, “yes I’m alive.” He said “yes we can still make it.” We drove to the Ontario airport, got Phil to the plane, transferred him to the plane and I helped Alaska Airlines get his wheelchair into the cargo bay of the plane. We landed in Seattle at midnight…Even though we had a hell of a day, I didn’t take time to think about Karen Wilke, who had been going back and forth every time to bring us her van.
Blair and Phil with Karen Wilkes
At 9 am I mustered up the strength to go downstairs and told Phil I needed to go to an Urgent Care for fluids. Phil responded with, “we don’t have any Urgent Cares here, it’s Ontario, California.” Whether I heard that correctly or not, he probably meant the nearest Urgent Care is 2 hours away with traffic. He then said there was an ER nearby. I was relieved. He pointed out the obvious fact that…”Blair, if you want to go to the ER, you have to drive.” We arrived at the ER that morning, missing our 10 AM departure for Seattle.
Before I walked into the ER and left Phil in the van (because he didn’t need to be in an ER with all the sick people), he asked if I thought we’d still be able to go to Seattle, to which I responded yes. He rebooked our flight for 1 PM… 1PM came around and I got a police escort to the car, since they do not usually let people leave with an IV in their arm. I was worried that I had left Phil in the car too long and there was no cell service in the ER. Phil was fine, and asked me again if I still wanted to go and this scenario repeated itself from 10 AM to 1 PM, 1 PM to 4 PM, 4 PM to 6PM. Finally at 6 PM after three IVs, a CT scan, and lab work, we were heading back to his house.
We are lucky to have so many friends within the ALS community, including Karen, whose husband, Bob Duffy, lived with ALS. I hadn’t spoken to Karen in years, but when Phil mentioned he needed a van when we landed in Seattle, Karen came to mind. Phil and I reached out to Karen and she offered her van, herself as our “driver” and a shower chair for Phil. After landing in Seattle, Karen was gracious enough to pick us up from the airport at midnight. After she dropped us off, Phil turned to me and said, “I immediately knew I had just met one of the sweetest people ever.”
After a long flight and some much-needed rest, Phil and I kicked off a day packed with meetings. Our first meeting was with the incredible team at Microsoft, including Bernice You, GM, Strategy & Projects, SMC and Edward Un, Senior Program Manager, Text-to-Speech, Microsoft AI Platform. Team Gleason is always looking for emerging solutions that will benefit the ALS community among many others. In an effort to find a better synthetic voice solution, we met with Bernice and Edward to discuss Microsoft’s Azure Custom Neural Voice. The Azure Voice captures tone and inflection unlike a majority of the options available today. My travel buddy, Phil Green, has been a driver of finding these technologies. Alongside Phil and the Team Gleason’s Technology Advisory Committee, we have made it a goal to bring these solutions from leaders in the tech industry to the communities that need them most.
Next, Phil and I met up with Jay Beavers, who actually sits on the Team Gleason Technology Advisory Committee. After dining at Twin Dragon restaurant – Jay and Phil’s favorite restaurant in Duvall, WA – Phil, Jay, and I met about Tolt Technologies Ability Drive in an effort to bring the AAC and CRT industry together creating an “Ecosystem of Support.” This will result in a higher level of service for both companies and customers. This ecosystem will better inform clinicians, reps, and ATPs about emerging independence-providing solutions such as Ability Drive, so that the customer is made aware of, and can get quicker access to, the latest technology.
Back at the hotel, Phil and I met up with another impactful individual, Cassa Hanon. Cassa began donating to Team Gleason a while back, believing in the mission after fellow WSU alumnus Steve Gleason was diagnosed with ALS. (GO COUGS!) It is often said there are three ways to contribute to a nonprofit, with time, treasure or talent…Cassa is one of the best examples of someone that provides all three. Cassa has been advising Team Gleason through coaching our technology specialists, enhancing collaborations and partnerships through designing solutions for people with ALS. We were excited to sit with Cassa and discuss design-thinking and other ways to further accessibility in the ALS community.
Blair and Phil with Microsoft Azure Team
Blair and Phil with Tolt Technologies
Blair and Phil with Cassa Hannon
Finally, we rounded out our trip by attending a very special football game in Kirkland, Washington. This was Phil’s son, Hunter’s, last home high school football game. Senior Day is pretty big for an athlete, and getting to be there with Phil was pretty special. Hunter’s team pulled out an impressive 28-13 win, ending our trip on an especially high note.