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.
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.
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.
Our Community Weekend 2026 will be taking place from Friday 9th to Sunday 11th October at The Manchester Deansgate hotel.
Please visit our Community Weekend 2026 page for further information about the event, including how to book.
We held our Community Weekend on Friday 19th to Sunday 21st September at Hilton Wembley London hotel. We had a wonderful weekend with our community members and professionals.
We recorded presentations at our Community Weekend which are available to view on our YouTube channel. We have created a playlist with all the available presentations from the weekend called ‘Alex TLC Community Weekend 2025’.
This impacrt report was based on an online feedback survey which attendees completed. This included individuals and families affected by leukodystrophy and professionals (doctors, researchers, pharmaceutical representatives and patient advocates). The event included a science day for professionals, which was co-hosted with Leukolabs, and two days for everyone, including presentations, workshops and children’s activities.
We held our Community Weekend on Friday 11th to Sunday 13th October at Park Regis Birmingham hotel. We had a great weekend with our community members and professionals.
We recorded presentations at our Community Weekend which are available to view on our YouTube channel. We have created a playlist with all the available presentations from the weekend called ‘Alex TLC Community Weekend 2024’.
We held our Community Weekend on Friday 28th April to Monday 1st May 2023 at the Hilton Birmingham Metropole at the NEC. We recorded presentations at our Community Weekend which are available to view on our YouTube channel called ‘Alex TLC Community Weekend 2023’.
Click here to view the playlist: CW2023 presentations
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
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