Our Community Weekend brings 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.

What’s Involved?

  • Presentations from medical professionals
  • Group Q & A sessions
  • Workshops & activities for families
  • Peer networking & support
  • Geographically central UK venue
  • All-inclusive for affected families
  • A wealth of knowledge & research


Why are they important?

The event is a one of its kind within the UK for those affected with a leukodystrophy. In 2019 we expanded our services, due to increasing demand, to support all leukodystrophies. Our vision is to build stronger peer support networks, awareness, and education through a vital calendar community event to complement our support services for families and sufferers whilst facilitating open dialogue with medical professionals. Our weekend event sets a legacy and influences our community communications well into the future, creating peer support networks that our families so desperately need.

Alex TLC currently receives no government funding and the charity’s running costs are funded through the profits from our five Charity Shops. We rely heavily on donations, grants, and fundraising initiatives to maintain our support services for all those affected with these diseases.

Alex - The Leukodystrophy Charity

Community Weekend 2023…Save the Date!

We will be having our next in person Community Weekend on Friday 28th April to Monday 1st May 2023.

Please make sure to save this date in your diary! The venue is the Birmingham Metropole Hilton at the NEC Birmingham. We will be sharing further details about the event soon. If you have any questions, then please contact info@alextlc.org

Alex - The Leukodystrophy Charity

Previous Community Weekends

Digital Community Weekend 2021

We recorded presentations at the weekend and the content is available on our YouTube channel. To access the playlist of the content, click on the link: DCW 2021 Playlist

We held Question and Answer sessions involving the professionals that presented on each of the days. We produced a written summary of the questions and answers discussed during these sessions. Please click on the link to view the summary: Q&A Summary

The Impact Report for our Digital Community Weekend 2021 is now available to view. To view, please click on the link: Impact Report


Digital Community Weekend 2020

Our 2020 Community Weekend was a great success, for those who were unable to attend we have released many of the presentations and talks on our YouTube channel. To access the playlist of the content, click on the link: DCW 2020 Playlist

Alex - The Leukodystrophy Charity

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