What we do
Alex, The Leukodystrophy Charity is all about delivering high quality support, advice, knowledge and care for those affected by one of the leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavour to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.
Making a difference
Support and access to treatment for everyone living with leukodystrophy
- Provide support for those living with leukodystrophy, and their families/carers
- Raise awareness of leukodystrophy
- Improve best practice in prevention, diagnosis & treatment
- Support research initiatives
We do this through a comprehensive and sensitive package of support, managed by real people with actual experience of the many aspects of living with a leukodystrophy.
Our information and services are reviewed regularly by our medical advisors, staff and our Steering Group, made up of beneficiaries representing the diversity of leukodystrophy as well as the many phases and characteristics of individual conditions.
We undertake various projects to improve the quality of, and access to, treatments for leukodystrophy through our collaborations with the NHS, specialist medical professionals and scientists, peer and umbrella organisations, and corporates with a common goal.
Medical Research Promotion
Alex TLC is the recognised voice for leukodystrophy patients in the UK – pharmaceutical companies often request our assistance in the development of, and recruitment for, clinical trials. Although we cannot fully fund medical research trials due to the costs involved, Alex TLC will endeavour to direct any donations specifically for research to a viable project which has been vetted by our Medical Advisory Board.
We may consider applications from research organisations for small grants towards medical research projects.
Alex TLC provides summaries and updates of relevant research studies and medical papers, which can be viewed on our Research and Clinical Trials page.
We also fund Informational Research, such as studies exploring the impact of these conditions on patients and those that care for them, which we believe is vital for improved quality of life.
Charity Shop Chain
Not only are we a charity, we are also a business and our charity shop chain is an integral part of Alex TLC, providing employment and volunteering opportunities for the local community as well as much needed high street awareness of these little-known conditions. These shops are our financial backbone and an important link for further income and awareness raising opportunities: our corporate team building activity has become a popular and sought-after event with businesses “taking over” our shops for the day to bring in the most money and compete with each other.