When Kate and Zac Cassebarth attended their first SYS Family Conference hosted by the Foundation for Prader-Willi Research in 2024, they left with more than just new knowledge about Schaaf-Yang syndrome (SYS)—they left inspired.
“We realized that funds for SYS research come directly from families like ours,” Kate shares. “There’s no federal or pharmaceutical funding. If progress is going to happen, it’s because of us.”
That realization sparked months of brainstorming with Zac, her in-laws Gregg and Kathy, and Kate herself. After celebrating Zac’s birthday with a sporting clay shoot at Camanche Hills in Ione, California, the idea clicked:
“Why not host a sporting clay fundraiser shoot of our own?”
Drawing on her own high school experience with trapshooting, Kate had the perfect blueprint. From that moment, the Schaaf-Yang Shootout was born.
On December 7, 2023, Kate and Zac received the diagnosis that would change their lives: their daughter, Emery, had Schaaf-Yang syndrome.
“Finally, we had answers—but it was really scary too. We had so many questions about what her life would look like,” Kate recalls.
One of her first steps was to join the SYS Families Facebook group, where she was warmly welcomed. Through that community, she discovered the annual conference and has since attended twice, building lifelong friendships with other SYS families across the country.
Kate also connected with another SYS family close to home—Kim and her daughter, Lyla. The two moms and daughters get together regularly for “mommy-daughter dates,” sharing the highs and lows of life with SYS.
“This community truly is a family,” Kate says. “We may be small, but we are mighty.”
Planning the first Shootout was no small feat.
“It felt like planning a wedding all over again!” Kate laughs. “Months of work boiled down to a seven-hour event.”
With adrenaline carrying her through the day, Kate embraced the role of event coordinator—directing volunteers, keeping everything organized, and making sure the day ran smoothly.
Her goal was simple: keep things streamlined, learn from the first year, and set the stage for future success.
And succeed they did. Community members praised the Shootout for being well-run, fun, and unforgettable. Many promised to return next year and bring friends along.
Therapies: Since just four months old, Emery has participated in early intervention, weekly physical therapy, occupational therapy, and now speech and feeding therapy. Kate works hard to weave therapy into daily life without overwhelming her.
Treatments: Emery takes both growth hormone and oxytocin, which have helped her tremendously. She’s now in the 15th percentile for height (up from below the 1st), has strong muscles, and is becoming more interactive and aware of her world.
Milestones: “She’s come such a long way from her six-week NICU stay,” Kate says. “She’s starting to laugh, play with more advanced toys, and engage with others.”
Dr. Schaaf once told Kate that the first year is the hardest—and she agrees. “But you adapt, you find silver linings, and you learn from your child,” she says. “They teach us to slow down, to embrace their unique rhythm, and to appreciate life differently.”
Kate and Zac know Emery will likely live at home with them for life—and they welcome that.
“She’s an easy child with a great sense of humor. She knows what she likes, and we love her exactly as she is,” Kate says.
For the Cassebarths, fundraising is about more than research—it’s about giving Emery the best quality of life possible. That’s why they’ve committed to making the Schaaf-Yang Shootout an annual tradition, rallying their community to support Emery and all kids living with SYS.
“Every dollar counts,” Kate says. “Since there’s no federal or pharmaceutical funding, it’s up to us as parents to push research forward. And FPWR is here to help—this is their specialty. Together, we can make a difference.”
The Cassebarths’ story is a powerful reminder of the strength within the SYS community—small but mighty, united in hope, and driven by love.