What began as a casual birthday celebration at a local brewery has grown into one of the Schaaf-Yang syndrome (SYS) community’s most heartfelt annual fundraisers. Nearly ten years ago, Leslie and her husband found inspiration in an FPWR event hosted by Executive Director Susan Hedstrom and decided to turn their son Nathan’s birthday into a tradition that would bring friends, fun, and hope together for a cause that means everything to their family.
“We attended a fundraiser Susan hosted at a brewery,” Leslie remembers. “It was so casual and fun, and we thought, we already
That idea became Nathan’s Hoppy Birthday, a fundraiser that has evolved from a small get-together into a full-scale community event. “The first couple of years, it was just at a friend’s brewery, and he would kick back a percentage of his profit,” Leslie explains. “Then we approached a restaurant we loved, and they agreed to donate food and drink proceeds. We added our first raffle that year.”
Almost a decade later, Nathan’s Hoppy Birthday now includes a silent auction, swag, raffle, and even a kids’ raffle. Hosted at one of the family’s favorite local spots, it has become both a celebration and a symbol of perseverance. “We’re always thinking of ways to make it better and bring in even more money for research,” Leslie says.
For Nathan, who just turned 11, this annual event has made birthdays uniquely meaningful. “Nathan is such an easygoing kid,” Leslie says. “Buying him gifts can be difficult since he doesn’t really play with the typical things 11-year-olds like. Turning his birthday into a fundraiser felt like the perfect way to honor Nathan and let people show him love without gifts he won’t use. The greatest gift for Nathan is the support of his friends and the hope of a potential cure for Schaaf-Yang syndrome.”
The Born family’s journey with SYS began when Nathan was diagnosed as the 17th known case in the world. “It took a year to get Nathan’s exome sequencing results,” Leslie recalls. “Once we had them, we knew the mutation was on the MAGEL2 gene. I found a Facebook group for MAGEL2 families, and they connected us with the Goff family and Dr. Schaaf, who welcomed us with open arms.”
Since then, the SYS community has become an anchor for the Borns. “As our community grows, we’re learning bigger and better ways to advocate for our children,” Leslie says. “I’ve been to all but one family conference, and I wish every family could go. There’s nothing quite like being surrounded by people who understand your journey. Even though we only see each other once a year, it always feels like home.”
When asked about her favorite memory from nearly a decade of hosting Hoppy Birthday events, Leslie doesn’t hesitate. “Our third year was my favorite. We switched to a bigger restaurant and added a raffle—I was so scared I would fail, but I also felt more confident than ever because Nathan motivates us to look outside ourselves and lean on God to provide. That year, it went from just our group of friends to inviting total strangers into Nathan’s story. It taught us that Nathan has a way of teaching everyone to be better and more selfless.”
Faith plays a central role in the Borns’ journey. “Nathan teaches us more than we could ever learn from a book or a teacher,” Leslie says. “He’s shown us what true unconditional love looks like, that timelines don’t define us, and that adapting expectations in a healthy way is okay. This isn’t the parenting journey we expected—but it’s been the biggest blessing in our life.”
For years, Leslie says, fundraising for SYS felt like investing in a “hopeful, hypothetical” future. But with the launch of FPWR’s GeneSYS Project, that hope is now tangible. “I almost have to pinch myself,” she says. “All the hard work we’ve done to raise money and advocate is yielding real results. It’s more important than ever to encourage other families to fundraise—find something you love and start there. If it works, keep going. If it doesn’t, change gears. And lean on FPWR for help! Any amount raised is more than zero.”
Having been one of the earliest families to join the SYS community, Leslie’s advice to newly diagnosed families comes from
Reflecting on their journey, Leslie says Nathan continues to shape their family’s outlook on life and love. “We feel so blessed that Nathan was entrusted to us—we truly consider ourselves the lucky ones,” she says. “Nathan has taught us humility, inclusion, adaptation, and advocacy. His siblings have learned to love in a way that we hope they’ll carry into the world, making it a kinder, more understanding place.”
Through Nathan’s Hoppy Birthday and the Born family’s unwavering faith and determination, their story continues to inspire others in the SYS community and beyond.