Join us October 9–10 in Philadelphia for the annual FPWR Family Conference, a unique gathering dedicated to families and professionals affected by Schaaf-Yang syndrome.
Over two powerful days, leading researchers, clinicians, and families from around the world will share the latest research updates, practical strategies, and hard-earned insight.
Whether you’re newly diagnosed or years into this journey, you’ll leave with clarity, community, and renewed confidence.
Here are the top 10 reasons you don’t want to miss it.
10. Explore Philadelphia, PA
Our 2026 FPWR Family Conference takes place in the heart of Philadelphia, Pennsylvania, at the centrally located Philadelphia Marriott Downtown — steps from historic landmarks, incredible food, shopping, and sports.
Visit Independence Hall, explore the Liberty Bell, or grab a bite at Reading Terminal Market, all within walking distance. Whether you come early or stay a little longer, Philadelphia makes it easy to turn your conference trip into a memorable family experience.
Discover the can't-miss things to see and do in Philadelphia!
9. Empowerment
Having a child with SYS changes who we are. But it also reveals strength we didn’t know we had.
Attending the FPWR Family Conference is a powerful step toward taking control of your future. Surrounded by a community that understands this journey, you’ll gain knowledge, confidence, and renewed hope, and leave feeling equipped to navigate life with courage and determination.
8. Direct Access to the Latest Schaaf-Yang Syndrome Research
Nowhere else will you hear directly from leading experts like Dr. Christian Schaaf, Dr. Harold van Bosse, Dr. Patrice Carroll, Elizabeth Roof, Dr. Deepan Singh, and other top researchers, all in one place.
Discover the latest breakthroughs in research, clinical care, and treatment development, straight from the scientists and physicians advancing the field.
7. Meet the Experts
Every session includes dedicated Q&A time, giving you the opportunity to ask questions directly to leading SYS physicians and researchers.
Connect with speakers at the Friday Welcome Reception or during coffee and lunch breaks, and gain thoughtful, personalized insight for your loved one in an approachable, intimate setting.
6. Gain Clarity You Can Carry Home
Research can feel overwhelming. Hearing directly from experts makes it clearer and more actionable, so you can speak confidently about SYS care, research, and treatment options in medical appointments, schools, and everyday conversations.
5. Find Your People
There’s nothing like being in a room full of parents who truly get it. No explanations. No awkward pauses. No blank stares.
Just shared experience, shared language, and the quiet relief of knowing you’re not alone. Lifelong friendships — and an unshakable sense of community — are built at every FPWR conference.
4. Designed for Connection
Everything happens in one central location — sessions, meals, and evening events — so you won’t spend your weekend navigating traffic or splitting up across the city.
The layout of the conference is intentionally designed to maximize time together. Less logistics. More conversation. More connection.
3. Be the Parent You Once Needed
Every family starts somewhere. Whether you’re newly diagnosed or years into this journey, you remember what those early days felt like.
The FPWR Conference creates space to ask for help, and to offer it. By showing up, you become part of a community that ensures no SYS family has to navigate this path alone.
2. Laugh. Celebrate. Exhale.
Yes, the educational program is powerful, but the moments between sessions are just as meaningful.
From Friday’s Welcome Reception to Saturday’s Live Life Full Gala at Baller’s Philadelphia, the weekend is filled with laughter, shared meals, and real connection. The FPWR community knows how to show up for one another, and how to celebrate together.
You’ll leave informed. You’ll also leave lighter.
1. Turn Hope Into Action
If you’ve ever wondered how to make a difference in the world of SYS, this is where it starts.
The FPWR Conference connects you with passionate parents, researchers, and advocates who are actively advancing research, awareness, and support. Whether you want to fundraise, volunteer, advocate locally, or simply stay informed, you’ll leave with clear ways to get involved and move the mission forward.
