The Alex TLC Digital Community Weekend brings together people affected by Leukodystrophy and their families, alongside doctors, researchers and scientists from around the world to support each other and discuss its impact, patient needs and developments. Normally held in person, this year’s event was held online for the first time due to ongoing COVID-19 risks and associated restrictions.
The event gives sufferers and their families the chance to hear treatment updates from and ask questions of leading doctors in the field, as well as talk freely about mutual issues. They were also invited to participate in activities designed to put attendees at ease and encourage interaction, such as doctor moderated networking sessions, a family friendly quiz and a music session from fellow Leukodystrophy sufferer, Max Pahmp. This online event also offered children’s activities for all ages and abilities including a creative workshop, a magic show and literature design workshop. It also gives medical professionals the opportunity to hear directly from those affected and presents a rare opportunity to progress research ideas and best practices for treatment.
This year’s event was held via zoom on 7th and 8th November 2020. The 10th Community Weekend saw 2 full days of presentations, networking activities and workshops and was the first time running and hosting an event of this size and online