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Community Weekend 2025

Our Community Weekend 2025 took from Friday 19th to Sunday 21st September at Hilton Wembley hotel.

Friday 19th September

Daytime: Science Day (professionals only)

Late afternoon: community members arrive for the start of our Community Weekend

Saturday 20th – Sunday 21st September

Our Community Weekend for community members and professionals. The event includes presentations, community workshops, discussion groups, professional roundtable discussions and children’s activities.

If you have any questions about the event, please contact info@alextlc.org

Booking form

All available places for our community members have now been booked!

Please see below option to attend the event virtually.

Virtual attendance

We are offering the option of free virtual attendance for those unable to attend the event in person. The presentations will be live streamed from the main room at the event on Saturday 20th and Sunday 21st from 09:15-13:00. We will be recording all presentations from across both conference rooms and these will be uploaded to our YouTube channel after the event.

Please complete our virtual attendee registration form: CW25 virtual attendance

See the provisional virtual agenda below, please be aware this is subject to change:

Community Weekend Appeal

Our Community Weekend bring the leukodystrophy community together and helps to ensure that everyone affected receives the support they need. We need as much support as possible to make our Community Weekends the best they can be. Even the smallest donation can make a big difference, so please give what you can.

Community Weekend Appeal

Thank you to our sponsors for making this event possible

We thank all supporters of our event and we can confirm that no supporter has influenced the content or logistical arrangement of our Community Weekend

Why are our Community Weekends important?

Our Community Weekends are a treasured event by our Alex TLC patient and carer community and leukodystrophy professionals. They bring together leukodystrophy sufferers and their families, alongside doctors, researchers and scientists from around the world to discuss how leukodystrophies affect them and to build long lasting and supportive relationships.

By attending the event our aim is for individuals and families to:
  • Feel less alone in their journey
  • Connect with others experiencing similar challenges
  • Improve their knowledge and understanding of leukodystrophy
  • Feel more prepared for future challenges relating to their or their loved one’s condition
By attending the event our aim is for professionals to:
  • Connect and share ideas with other professionals
  • Develop collaborative working relationships
  • Meet individuals and families affected by leukodystrophy
  • Present about recent and future research
  • Present up to date condition information

“Amazing event. It was so nice to meet people with similar conditions and be able to share experiences and information. Also very heartening to see how passionate some of the professionals are about helping.”

“A great weekend, being in a room full of people on the same journey who get it.  I did not feel judged and felt part of something for the first time in years”

“I would attend again because it’s important to connect with other families affected by a similar disease from all over the UK and this is our ONLY opportunity to do so”

“It’s such an amazing weekend, meeting old and new families, learning about my condition and what it means for me and my family and interacting and engaging with Alex TLC staff.”

“The weekend is invaluable-I’d go as far as saying essential – in many ways”

Quotes from our Community Weekend 2024 Report