WE HAD A PAW-Some CONFERENCE!
The Xia-Gibbs Syndrome Family Conference 2026 took place over the weekend of June 6th and 7th at Great Wolf Lodge in Webster, TX.
Over 25 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, our playlist of edited videos is here!
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.
Scientists, clinicians and researchers from around the world joined families affected by XGS to share the latest research into Xia-Gibbs Syndrome and the AHDC1 gene which causes it.
Faces familiar to our community, including Prof. Richard Gibbs and Dr. Jianhong Hu from the Baylor College of Medicine Human Genome Sequencing Center joined our XGS community at the event, while teams from Stanford University, Italy and Brazil attended virtually to contribute to the discussion.
In answer to a question from the floor about the hope for a treatment, Prof. Gibbs explained, “What we want to do is…to understand what [AHDC1] does and how it does it, so we can design an intervention.”
Members of the Society’s board shared their experiences living with their loved ones with XGS, and offered help in understanding the science, with life-planning and with accessing supports.
Incoming Board President Kevin Wren emphasised the centrality of the Xia-Gibbs Syndrome community to the Society’s project, saying “This is your Society. You’re here with us and we’re here with you. We want to share in all of your successes – and any struggles you have we want to lift you up.”
Board Treasurer Patricia O’Connor, whose brother Kevin is the oldest known person with Xia-Gibbs Syndrome, said of his diagnosis “Kevin was diagnosed when he was 56, in 2019. Until then we had no idea why he was the way he was…so for us it was a real gift to finally know the answer of what made Kevin the special guy that he is.”
For many attendees the conference 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.
“It was very lonely before we got the diagnosis.” said Kaleo McCabe, who traveled with his family from Hawaii to attend the conference. “When we found this community and found the people it’s like we’re a family, with people who understand what we went through.” His wife Janelle added, “It’s super helpful and just really amazing to have the connections.” Kaleo also said “This conference has been a huge blessing for our family.”