WAGR Weekend 2026 was held in Raleigh, Apex, North Carolina. It was hosted by the Cox Family and supported by a wonderful group of supporters and volunteers. Families came together for a weekend of sharing, connecting, learning, and fun.
Friday started with registration and a group dinner, followed by Dad’s Night get together. Moms and the kids relaxed at the hotel, enjoyed the pool, and played cards and Corn Hole. The moms got together over breakfast on Saturday morning to catch up and provide support to one another.
The Annual Family Meeting took place on Saturday, moderated by IWSA Board Chair John Morris. Presentations were made by
IWSA Executive Director Shari Krantz–review of IWSA activities and plans
IWSA European Representative Linda van de Sande–fundraising and WAGR Awareness Day 2026
IWSA Director or Research and Medical Advocacy Kelly Trout–”No Lab Coats Required: Solving the WAGR Puzzle Together”
Ophthalmologist Dr John Freeman–”Basic Introduction to PAX6 gene-related Eye Disorders”
Pediatric Neurologist Dr Keri Drake–”Risks of Kidney Disease in WAGR Syndrome”
Occupational Therapist Fay Tripp–”Vision Rehabilitation and Performance”
A Q&A and discussion session followed the presentations. All presentations are available for viewing on the IWSA’s Youtube station.
Saturday afternoon provided free time for families to enjoy local children’s museums, the hotel pool, and relaxing and visiting with old friends while making new ones.
Saturday evening the group enjoyed a Carolina-style barbecue dinner served by a wonderful group of volunteers. After dinner the group was entertained by parents and kids who participated in karaoke. There was dancing and singing, and the talents of many showcased! This WAGR group was loaded with talent and was not afraid to share it!
The Cox Family hosted a cook out on Sunday at their home for families staying in the area.
The next WAGR Weekend will be held in Norway, hosted by Andrea Daehl and Simen Andresen, August 6-8.
Additional information on the conference, including the presentation summaries and recordings, can be found here