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.
We held our Community Weekend on Friday 28th April to Monday 1st May 2023 at the Hilton Birmingham Metropole at the NEC. It was a great success and we want to say thank you to everyone who attended!
Impact report available to view
We have produced a community weekend 2023 impact report which is now available to view. This is based on the responses given in the impact survey which was completed by attendees. To view, please click here: Impact Reports
Recorded presentations available
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 2023’.
Click here to view the playlist: CW2023 Presentations
Virtual Attendance at our Community Weekend
We livestreamed presentations from the community weekend via Zoom. This was to help make the event accessible for those unable to attend in person. The Virtual Agenda for the presentations being livestreamed can be viewed here: CW23 Virtual Agenda
Community Weekend Agenda
The agenda includes the presentations, workshops, professional roundtable and activities being held over the weekend. The community weekend agenda can also be downloaded as a PDF by clicking here: CW23 Agenda
Find out more by visiting their website: Ionis
Find out more by visiting their website: Minoryx Therapeutics
Find out more by visiting their website: Vigil Neuro
Find out more by visiting their website: Viking Therapeutics
Find out more by visiting their website: Bridge Bio
Find out more by visiting their website: Neuraxpharm
Find out more by visiting their website: Orchard Therapeutics
Find out more by visiting their website: SwanBio
British Trust for the Myelin Project
Find out more by visiting their website: The British Trust for The Myelin ProjectJeans for Genes
Find out more by visiting their website: Jeans for Genes
Find out more by visiting their website: Affinia Therapeutics
Find out more by visiting their website: Forge Biologics
Find out more by visiting their website: Poxel
- 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.
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