The Schaaf-Yang syndrome (SYS) community came together in Philadelphia for the SYS Family Conference, bringing families, researchers, and clinicians together for an opportunity to learn, connect, and reflect on the progress being made in SYS research.The conference highlighted the importance of collaboration between families and researchers in advancing understanding of Schaaf-Yang syndrome. It was also an opportunity to recognize individuals and families whose dedication has made a lasting impact on the SYS community.
Honoring Champions of Hope and Impact
One of the highlights of the conference was honoring Dr. Christian P. Schaaf, MD, PhD, with the 2026 Champion of Hope Award. Presented by FPWR and the SYS community, the award recognizes Dr. Schaaf’s contributions to advancing SYS research and his commitment to the community.
Dr. Schaaf also presented at the conference, sharing his expertise and insights on Schaaf-Yang syndrome. If you weren't able to attend in person or would like to revisit his presentation, you can watch the recording on YouTube.
The conference also celebrated the Nelson family with the Decade of Impact Award, recognizing 10 years of extraordinary dedication and commitment to advancing Schaaf-Yang syndrome research. Their continued involvement is a powerful example of the important role families play in helping move research forward.
These recognitions were meaningful moments in a conference centered on shared learning, collaboration, and the collective effort to improve the future for individuals living with SYS.
Looking Ahead to Houston
As the Philadelphia conference comes to a close, the SYS community can look forward to gathering again next year in Houston, Texas. These conferences provide valuable opportunities for families to connect with one another and with the researchers and clinicians working to advance understanding of Schaaf-Yang syndrome.
Thank you to everyone who joined us in Philadelphia and to all the families, researchers, and clinicians who continue to make progress in SYS research possible. We look forward to continuing this work together and seeing the community again in Houston!
