Community Weekend

* Update : Take a look at our Digital Community Weekend taking place in Novemeber

We provide support, advice, knowledge, and care for those affected by genetic leukodystrophies. The majority of these rare conditions are largely untreatable and sadly terminal.

Our Community Weekend is a biennial event to bring together our leukodystrophy family to build meaningful support networks.

Alex - The Leukodystrophy Charity

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.

Alex - The Leukodystrophy Charity

Digital Community Weekend 2021 – SAVE THE DATE for the 20th – 21st November.

All the information you will need for our second Digital Community Weekend


SAVE THE DATE for the 20th – 21st November

Alex - The Leukodystrophy Charity

An Event to Build Hope

Our 10th Community Weekend is our most ambitious and inclusive to date. Specifically designed to bring together sufferers and their families, alongside doctors, researchers and scientists from around the world to meet, learn and support one another over a weekend of talks and activities.

As the only event of its kind within the UK for those affected with a leukodystrophy, 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.

In 2019 we expanded our services, due to increasing demand, to support all leukodystrophies.

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

Our Community Weekend is supported by our fundraising efforts and the kind work of Global’s Make Some Noise & Bluebird Bio.

Global’s Make Some Noise is a national charity that supports small charities that look after some of the most vulnerable in our communities. Supported by Global, the media and entertainment group and is passionate about giving back to the communities to which it belongs. Global does so by supporting Make Some Noise as part of their Corporate Social Responsibility plan.

bluebird bio™ are a pharmaceutical company developing gene therapy for patients unable to have a traditional bone marrow transplant.They provide annual funding for our support and awareness raising work and have been instrumental in our assays to introduce new born screening for adrenoleukodystrophy (ALD) to the UK. We are very grateful to them for funding this website

Community Weekend Overview

  • 3-Days: Fri – Sun
  • 200+  attendees
  • Presentations from medical professionals
  • Group Q & A sessions 
  • Workshops & activities for families
  • Child-led fun activities
  • Peer networking & support
  • Geographically central UK venue
  • All-inclusive for affected families
  • A wealth of knowledge & research
Alex - The Leukodystrophy Charity

Support Manager Karen On Community Weekend

Alex - The Leukodystrophy Charity

Jayne Spink – Genetic Alliance

Alex - The Leukodystrophy Charity

Julie – Community Weekend Attendee

Alex - The Leukodystrophy Charity

Aaron Corr on our Community Weekend

Alex - The Leukodystrophy Charity

What People Say

The main driver for attendance is peer support.

181 people attended our 2018 Weekender, 115 of these were individuals and families coping with a Leukodystrophy. Of the remaining attendees, 41 were medical professionals and 25 were staff, volunteers or trustees of Alex TLC.

Meeting & talking with medical professionals

An important element of the Community Weekend is the ability to question and talk to medical professionals. Attendees are invited to ask questions to those presenting and to question all presenters in a large group session at the end of the weekend. Medical professionals are available to actively engage with individuals and families throughout the weekend.

What other reasons are beneficial for those attending?

Those attending the Community Weekend due to their own condition or that of a loved one have a variety of reasons for attending our event. Over 80% hoped to learn more about leukodystrophies or have the opportunity to meet knowledgeable doctors and medical professionals.

How medical professionals benefit

The two main drivers for medical professionals attending our event is to meet other medical practitioners within a similar area of research and engage with families & individuals affected by the conditions they are practicing in.