Pedaling for Down syndrome health and longevity
A little over a year ago, in March 2025, I went on a bike tour in Spain while grieving the sudden death of my brother Tom at age 35. In April 2025, we gathered to remember Tom on what would have been his 36th birthday. As the one-year anniversary of his death and memorial came around, I reflected on what this past year has held.
Remembering Tom, one year on
In June 2025, Nathan and I rode with the Courage Classic Dare to Ride cycling team, raising money for the Sie Center at Children’s Hospital. As part of that, my dad and I got to take a tour of the clinic at Children’s Hospital. It amazed me to see how far we’ve come in terms of medical care and interventions for Down syndrome, with important global research happening right here in Denver. The Sie Center’s mission of longer, healthier lives for people with Down syndrome is especially resonant to me.
Last September, I was invited to join the Sie Center Development Board. As a board member, I’ve gained the tremendous gift of community. I’ve met other families at all stages of their journey with Down syndrome — mostly parents whose kids and teens benefit from Sie Center resources and supports. I’ve stepped up as co-captain of the Dare to Ride team, which has grown to over 40 members for this 2026 ride!
This ride is my way of remembering Tom each year and building a living legacy for him.
Ambitious Rides and Big Goals
This year, I’m taking on the most difficult and ambitious of the ride options each day:
- July 18: Copper Loop. 80 miles, 6,500 feet of gain
- July 19: Loveland Pass. 61 miles, 5,000 feet of gain
I won’t ask anyone to join me on these rides (unless you’re feeling very motivated!), but I am asking you to walk alongside me as our team pursues a fundraising goal of $50,000 Any amount of donation is meaningful! I recommend $35 — to celebrate each year of Tom’s life!
The team has grown from 10 to over 40 cyclists and participants this year. We’re always looking for newcomers to join our team. If you’re interested in joining the team this year, check out our team page. If you’re interested in joining next year, save the date for the 3rd weekend of July. It’s an iconic cycling event in Colorado with a big heart.
In Honor of Thomas J. Ord, 1989 – 2025
Tom was born the 4th of 5 Ord children in 1989. He loved musical theater, Disney, spending time with his family, and dressing up for special events.
Age 35 is too young for anyone to die, including people like Tom. He lived with Down syndrome and several other health complications. Yet his sudden death in March 2025 caught his family and Tom’s entire community by surprise.
Today’s children, teens, and adults with Down syndrome have ever-improving interventions and standards for care, thanks to the important research and advocacy work the Sie Center is doing.
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