Cambridge was the perfect backdrop for WAGR Weekend UK 2019. In August, seventeen families spent the beautiful summer day together at the CASS Centre at Cambridge University Press. There were both indoor and outdoor activities to entertain the kids while parents listened to formal presentations. This year’s event was attended by families from the UK, US, and Ireland.
The day’s agenda included time for discussion and Q&A, as well as an informative, interactive discussion with our amazing Jenny Langley, who was accompanied by her guide dog, Patty (who was a big hit with the children!). Jenny is an adult with WAGR syndrome and continues to share her life experiences and more recently her career as a teacher of visually impaired children. James Buller, UK Aniridia Network representative, presented about the organization’s goals and activities and shared details about the 5th European Aniridia Conference that the group will host in London in August 2020.
Formal presentations focused on:
IWSA organization updates
Research initiatives and updates
Fundraising for the IWSA
Behavior Challenges in WAGR syndrome
Auditory Processing Disorder
Sensory Processing Disorder
Saturday evening the group met in town for dinner, and discussions and experience sharing continued. Everyone agreed that time spent with other WAGR families is priceless—no one understands your challenges like another family living similar circumstances.
On Sunday, several families met for a picnic lunch and relaxation at Jesus Green, a gorgeous park in Cambridge. It was the perfect summer afternoon to continue visiting and spending time with other families. We were even treated to the music of a local jazz band.
Special thanks to the Wilkinson Family—Susan and Chris, and their kids Theo and Tara. Susan did an amazing job of planning and hosting this special event and Chris made sure everything went smoothly. Michelle Colhoun and Lizzie Pullen’s planning for entertainment and goodies for the children was also a big hit.
Thank you to everyone who supports the IWSA and donates to help us hold these important events. Special thanks to everyone who generously donated to the fundraisers held this year in the UK by Lizzie Pullen and Susan Wilkinson.
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886