Hello!
I think I will start every letter by saying this:
Thank you for being a part of Steve's ALS journey and making a difference in the lives of countless others who face this incurable, terminal disease every day.
I wanted to get in touch today to let you know that a Stevie Fever fundraiser is being held this weekend! Brian Hanlon is running this effort via Spartan Races in Blue Mountain and has been hard at work garnering support for this initiative. Take a moment to cheer Brian Hanlon, his son Cormac, Kevin Daly, Rylan Daly, Matty Connolly, and his girlfriend Meg Johnson, and Mark Tonon. Billy Daly, Colleen, and Sheridan and of course Steve himself will be cheering them on in person. Thank you to those of you who have already donated to the ALS society in Steve's name for this race!
As for Steve, he has had a few run-ins with hospitals recently and some setbacks that are, plainly put, devastating. This disease does not play. But the guy faces it with the kind of strength and determination one can only imagine. I am in awe. I am in total awe of Steve, Cory, and those incredible kids every single day I am with them. The other night, I sat with the kids and Steve as they ate dinner and I wondered how the hell we got here. How was it that music wasn't blaring, Steve wasn't singing or telling a story passionately on volume 11? But then, the kids were laughing and bugging each other, stealing each other's milk, and simply being....kids. As Steve looked at them intently, listening to their banter I realized, this bloody disease begs, no, demands that one stays present. Thinking about what has been lost or what will be lost or how it used to be--that is the for the birds. Nobody can imagine what Steve thinks or feels during these times but I do know that at this moment, a hug, a kiss, an 'I love you' means everything. Just as Morrie said (from Tuesdays with Morrie), "Why pretend the feeling we need at the start and end of our lives isn't what we need in the middle." It's a good thing Steve is such a good hugger, and always has been!
Thank you for reading. I do hope you hug someone you love today and if you have a voice, tell them so.
All the best,
Trish Bentley trishbentley@gmail.com
#steviefeverforals is a campaign to raise funds and awareness for lifesaving ALS research
Stevie Fever is a year-round campaign to raise awareness and funds for lifesaving ALS research through various events and efforts such as dance parties, marathons, virtual challenges, and anything else you or I can come up with to raise money for this incredibly under-financed disease.
PS: Our biggest event of the year will be the Stevie Fever Dance Party taking place on June 10, 2022, at The Great Hall in Toronto. In the surrounding area of T.O this will be our focused effort so if you are in the area and want to get involved, this is the event to place energy. Please mark your calendars now! I need all the help I can get.
Don't forget to follow us on all socials and check out the Stevie Fever website which includes links to Team Captain toolkits to run your own fundraisers, sponsorship opportunities, ALS in current news, and Steve Daly's journey.
Wherever you live, if you have any ideas about a fundraiser you'd like to run for Stevie Fever, let me know. I can send you all the tools you need to make it a success!