Beneficiary Events

Activities and events to get involved with in the charity….

We have a number of exciting beneficiary events coming up over the next few months. Our events are held on Zoom in a group setting with other Alex TLC beneficiaries. From Alex TLC, Karen Harrison, Support Services Manager, and Suzanne Gosney, Beneficiary Engagement Officer, will attend the events.


Our Autumn Event

When: Wednesday 6th October 11:00-12:30

We will be joined by the Art Base who will be holding an interactive drawing art class. We will be drawing a zebra, the symbol for rare diseases. All you will need is a piece of paper, pencil, and rubber. Everyone is welcome to join, and the class will be accessible for all abilities, so don’t worry if you are completely new to drawing!


General Catch Up: Parents of Symptomatic Children

When: Monday 18th October 11:00-12:00

This meeting is being held for parents of symptomatic children. There will be an opportunity to ask questions, share concerns and as a group offer feedback and support to each other. Please be aware that this meeting may have parents with children who have a variety of symptoms and some with more advanced symptoms of leukodystrophy than others.


General Catch Up: Digital Community Weekend Discussion

When: Tuesday 2nd November 18:00-19:00

Come join us to discuss our Digital Community Weekend which is being held on Saturday 20th & Sunday 21st November. We are happy to answer any questions you have about the weekend. The catch up will be a chance to share ideas and thoughts about the event.



Alex TLC Digital Community Weekend

When: Saturday 20th & Sunday 21st November

Our weekend will include presentations about condition management, access to medicines, newborn screening, updates on existing and new research initiatives. There will be a professional round table, bringing research companies and medical professionals together to share information and encourage collaboration and progress. You will be able to enjoy a variety of activities including wellbeing workshops, sessions to help understand and get involved with the work of Alex TLC, and entertainment. There will also be opportunities to speak to others facing similar challenges to you.

Alex - The Leukodystrophy Charity