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.
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.
- 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
*Statistics from our 2018 Community Weekend survey
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.
Our survey from our 2018 Community Weekend showed that 71% of those attended the event to seek peer support. 4% attended in order to seek support after losing a loved one to a Leukodystrophy.
The remaining 25% attended due to professional involvement, this included Medical Professionals, Pharmaceutical Representatives, Partner Organisations, Communications Consultants, and Trustees.
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.
Alex, The Leukodystrophy Charity delivers high-quality support, advice, knowledge, and care for those affected by genetic leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal.
These very rare leukodystrophies have little to no support organisation working for them. Alex TLC focuses on the similarities caused by these conditions, embracing all affected within the community with Tender Loving Care.
We provide valuable support for all those living with leukodystrophy, raise awareness of these rare diseases, improve best practice in prevention, diagnosis & treatment and actively support medical research initiatives.
Our annual Community Weekend is a crucial event that allows our charity to align those directly affected by a leukodystrophy with a peer support network and to initiate a two-way conversation to assist medical professionals involved within this area of research.