When Grace and Dave think about the future, they picture their son Jack alongside countless other children like him. Jack is almost two and lives with Angelman syndrome. He was diagnosed last December after nearly a year of searching for answers to low oxygen, motor delays, and other developmental differences.
It was a hard road to reach that diagnosis. What helped it feel a little less lonely was the immediate support they felt from other Angelman syndrome families who reached out with advice, encouragement, and understanding. That sense of community has stayed with them. It is also what inspired their family fundraiser, the Jack Pack.
Why They Ride
Grace and Dave fundraise first and foremost for Jack, but not only for him. They ride and rally support for every child and adult living with Angelman syndrome, and for the families who love them.
“The path to and then getting Jack's diagnosis was so, so hard. And we definitely still have hard days,” they shared. “But Jack has also given us so much perspective, joy, strength, and community.”
They chose to support FAST because they want to fuel Angelman syndrome research and hopefully turn research into meaningful treatments. Fundraising is their way of turning all the fear and uncertainty of that first year into action.
Taking on LoToJa for FAST
To channel that determination, Grace and Dave, along with their friend Colby, signed up for LoToJa, a 207-mile bike race from Logan, Utah to their hometown of Jackson, Wyoming. It is the longest one-day USA Cycling sanctioned race in the country.
None of them had ever attempted a distance like this before. Their simple goal at the start line: finish the race and shine a light on Angelman syndrome.
They chose LoToJa because it mirrors their journey with Jack. There are steep climbs and tough stretches that feel endless. There are also moments of real beauty, joy, and strength that only show up when you keep going and lean on the people around you.
“Just as we leaned on each other and our support crew to get through the race, we continue to lean on our Angelman community as we navigate this path with Jack,” they said.
Turning Miles Into Impact
With the support of friends, family, colleagues, and neighbors, the Jack Pack raised $23,331 for FAST in the United States, plus an additional £3,000 for FAST UK. Every dollar and pound helps drive research that can change what it means to live with Angelman syndrome. For Grace and Dave, the numbers tell only part of the story. The messages, the encouragement, and the people who showed up for them matter just as much.
“We feel incredibly grateful to those who supported FAST financially and to everyone who has supported us with kind words, listening ears, advice, support, and love."
A Message for Families
Grace and Dave are honest that this journey is not easy. There are hard days and unknowns that cannot be neatly solved by a race or a fundraiser. But they have also found that saying yes to something big, like LoToJa, opened up new strength and connection.
“Riding LoToJa and fundraising for FAST gave us a great opportunity to step outside our own life with Jack and support a cause bigger than us. And for that, we are grateful,” they shared.
Their encouragement to other families is simple: you do not have to take on a 207-mile race to make an impact. Any effort to raise awareness or funds, in any size or form, can help move research forward and remind families that they are not alone.
Jack’s story is still being written, one milestone and one ride at a time. The Jack Pack is proof that when families, friends, and communities come together, those miles add up to something powerful: hope.