In 2019, my sister (Morgan Daniels) and her boyfriend (Peter Kelley) decided to ride 100 miles in the charity bicycle ride called the Tri-State Trek, started with the intent of raising funds for the world’s leading ALS research facility: the ALS Therapy Development Institute (ALS TDI). Over the years, and driven by a single, profoundly important goal - to discover viable treatments for ALS as quickly as possible - the Trek has raised over $9.5 million for ALS research. Morgan and Peter didn't even own bikes when they registered. We were so proud of their commitment to this cause, and I will never forget my racing pulse and my hoarse voice as I cheered her on as she blasted over the finished line. My father stood by my side, silently moved to tears, clutching his walker. This was a journey that began all because of him.
Many of my friends on social media grew up in my small town in Connecticut. You know my dad, Bob Daniels, well. He was your softball coach. He was your karate teacher. He let you climb into his oil truck at Valley View School and pull the horn. He was flipping burgers in the Exchange Club booth at the Portland Fair. He was dragging a hundred pound oil hose across your yard in waist-deep snow on New Years' Day, with a wave and a smile. A 5th degree black belt, runner, cyclist, and general athelete, my Dad was diagnosed with ALS in 2018. His symptoms began, slowly, years earlier. He has beat the odds with his slow progression. He is one the strongest and bravest people I know. Even as the most basic things have become impossible for him to do, even when he is exhausted in ways that most of us can't comprehend, even as so many things have been taken from him and from our family by this horrifying disease, he continues to fight with hope for a cure. On days when I am overcome with sadness by the things he can't share with his beautiful grandchildren, I remind myself that the example of humility and courage he is setting for them is invaluable, even as it comes at the very highest cost imaginable. And on days when I feel helpless, when I feel like we have read about every drug, every study, every theory in existence, I can absolutely relate to the idea of getting on a bike in an effort to do something to help.
ALS is not incurable. ALS is underfunded.
This year, with a virtual option, I can finally participate in the trek - my goal is 100 miles. I am excited and honored to join Team Daniels as we ride for the ALS community, and for my incredible father. Your support is encouraging, your virtual high-fives would mean so much, and your donations of even $5 truly make a difference as we inch towards our fundraising goals as both individuals and a group.
From the bottom of my heart and on behalf of my entire family and our Trek Team - Thanks, friends.