Online Family Update 2022

An online family update event took place on Wednesday 12th January 2022 at 4pm.

Our event compere, Dee Davison is organising for the recording to be subtitled and a link will be posted here once this has been completed.

If you attended our event please answer the evaluation questions and email [email protected] your response.

Event Evaluation
1. Did this event meet your expectations?
2. What did you like most?
3. What did you like least?
4. What could we do better?

We are hoping to plan an in person Family day towards the summer if COVID restrictions allow.

Event Programme Details

16:00 – 16:02Welcome: Event Host Professor Yanick Crow  
16:02– 16:07Event Compere: Dee Davison, Public Engagement Manager, Institute of Genetics and Cancer, University of Edinburgh   Welcome & Introductions: Professor Yanick Crow, Clinical Geneticist and ResearcherDr Eslam Al-Abadi, Consultant Paediatric Rheumatologist and ResearcherTina Nesbitt, Founder of the AGS UK Patient Organisation  
16:07 – 16:30  Professor Yanick Crow, MRC Human Genetics Unit, Institute of Genetics and Cancer, University of Edinburgh   Overview of AGSUpdate on AGS8/9Update on RTI clinical trial
16:30– 16:40Dr Eslam Al-Abadi, Birmingham Women’s and Children’s Hospital   Update on JAK inhibition in AGS
16:40 – 16:50Tina Nesbitt, AGS UK Patient Organisation   Inherited White Matter Disorder Centres & Registry
16:50 – 17:30Discussion & Q&A with participating families