our xgs family conference 2024 is a wrap!
On the weekend of May 18th and 19th we held our highly anticipated Xia-Gibbs Syndrome Family Conference in Houston, TX.
Over 30 families attended in person, and the conference was livestreamed online to a global audience, providing access to the XGS community worldwide.
If you missed it or want to recap, speaker bios and presentations can be found here, and we’ll be producing edited videos of each session soon! There’s more pictures from the conference here!
Top scientists, researchers, and families affected by XGS gathered to share groundbreaking discoveries and chart the future of research into Xia-Gibbs Syndrome.
Prominent figures from the scientific community, including Prof. Richard Gibbs and Dr. Jianhong Hu from the Baylor College of Medicine Human Genome Sequencing Center, and Dr. Anthony Oro of Stanford University, joined our XGS community at the event.
Together with the Society’s board (Emily Wilkinson, Monica Pendleton, Arika Estep, Molly Nelson and Kevin Wren), they explored how collaborative efforts can propel research and improve the lives of those affected by this rare condition.
“Connecting the lived experiences of individuals with XGS to cutting-edge research is crucial. Our family conferences provide an unparalleled opportunity for families to engage directly with experts, fostering a sense of community and shared purpose,” said Society President Emily Wilkinson.
For many attendees the conference also marked a once-in-a-lifetime opportunity to meet others sharing the experience of living with Xia-Gibbs Syndrome. Many families described it as a life-changing experience, especially given the isolation of living with such a rare disease.
Xia-Gibbs Society’s Family Conference marks a significant step forward in the fight against rare genetic disorders, showcasing the power of collaboration between scientists and families.
“I just want to say thank you to everyone who organized and put on this conference this weekend. It was a magical experience and we learned so much from everyone,” said Alicia Hampton, mom to Madalynn, aged 5, who traveled with her family from Bakersfield, CA.