On a chilly November evening outside Chicago, more than 150 people pulled on winter layers, grabbed their paddles, and headed to Exmoor Country Club. They came for fire pits, live music, and a casual night with friends. They left knowing they had helped move critical Angelman syndrome research forward.
For Ben and Elizabeth O’Connor, Ryan’s parents, the Paddle Party for a Purpose is far more than a fun night out. It is their family’s way of turning love for their son into action for every person living with Angelman syndrome.
Turning a Favorite Winter Sport into a Bigger Purpose
When Ryan was diagnosed with Angelman syndrome, the O’Connor family entered a world that many FAST families know too well: late nights of searching, new medical language to absorb, and a constant question in the back of their minds about what Ryan’s future would look like.
What they could not change was the diagnosis. What they could change was how they responded to it.
“We fundraise because our son Ryan lives with Angelman syndrome, and our family is committed to building a future where he and every child living with AS has access to safe, effective treatments,” Elizabeth shares.
The Paddle Party for a Purpose started with a simple idea: take something people already love and connect it to the mission that matters most to their family. Paddle is a favorite winter sport in their community, and Exmoor’s paddle hut is a local favorite, so it was the natural place to bring people together.
Connecting Their Community to the Heart of the Science
For Elizabeth and Ben, raising money was never just about hosting a great event. If they were going to ask friends and neighbors to give up a Friday night, buy tickets, and make donations, they wanted to be clear about where that support was going and what it could change.
As they learned more after Ryan’s diagnosis, FAST stood out as a foundation focused on driving research toward real treatments and cures for Angelman syndrome. FAST is the largest non-governmental funder of Angelman syndrome research in the world, with 23 programs in the current drug pipeline, 12 of which began as FAST-funded initiatives.
That gave the O’Connors something concrete to share when people asked, “Where does the money go?” When they invite someone to the Paddle Party for a Purpose, they can say with confidence that every ticket, sponsorship, and gift is helping move potential therapies forward for Ryan and for others living with Angelman syndrome. That clarity is part of what gives them the courage to keep telling their story and continue to ask for support.
FAST considers families like the O’Connors the heart of this work. Their willingness to open their lives, rally their community, and stand beside FAST is a big part of what makes this research possible.
What This Year’s Paddle Party Made Possible
This past November, the Paddle Party for a Purpose raised more than $72,000 for FAST. It more than doubled the previous year’s fundraising total and continued a three-year pattern of remarkable generosity and growth.
For Elizabeth, who experiences the event both as a mom and as FAST’s development advisor, this year felt like a turning point.
“The event sold out faster than ever. The room was full, the energy was high, and the sense of shared purpose was stronger than ever,” she reflects. “It was emotional to look out and see so many people from our community dedicating their night to supporting FAST and Ryan.”
What started as a family-led fundraiser has become a true community tradition, complete with a planning committee and a regular spot on the calendar. For the past two years, it has taken place on the Friday before Thanksgiving, a time when guests are eager to kick off the holidays by doing something meaningful that also helps move Angelman syndrome research forward.
The impact of events like this helps FAST:
Sustain comprehensive, global research that pursues multiple paths toward effective treatments and a cure.
Move the most promising ideas from early-stage discovery into translational work and clinical research.
Back leading scientists and partners worldwide who are focused on developing new therapies for people living with Angelman syndrome.
FAST is deeply grateful to Elizabeth and Ben and everyone who makes the Paddle Party for a Purpose possible. Their leadership turns community generosity into real progress and helps move Angelman syndrome research forward for families everywhere.
If You’re Thinking, “Could I Do Something Like This?”
If you are wondering whether you could do something like this, Elizabeth’s advice is simple:
Start small and start where you are. Your first event might be a backyard gathering, a neighborhood walk, a game night, or a local tournament. It does not have to be big or perfect.
Lead with your story. People care about you and your loved one living with Angelman syndrome. When you explain what it is and how research can change the future, you give them a clear way to help.
Trust that support is there. Asking can feel intimidating, but most people are grateful to be invited in.
“You do not need a flawless plan,” Elizabeth says. “You need purpose, community, and the courage to begin. The support you feel will be bigger than you can imagine.”
Your Idea is Enough to Start
At FAST, we are honored to stand beside families like the O’Connors who turn their love and hope into action. Events like the Paddle Party for a Purpose are not just fundraisers; they are proof of what is possible when a community decides to show up for science and for each other.
If you are a parent, caregiver, or supporter who is thinking about hosting your own event, know this: there is no “right” size or format. There is only your story, your community, and your willingness to take the first step. We are here to help you turn that into something powerful.
One winter night in a paddle hut has already raised tens of thousands of dollars and rallied a community around Ryan and a cure for Angelman syndrome. Just imagine what your idea could do.
You do not have to figure it out alone. If you would like to explore a fundraiser for FAST, contact Krista Nanigian at krista.nanigian@cureangelman.org. We can help you shape an idea, plan the details, and connect your event directly to Angelman syndrome research.