Alex, The Leukodystrophy Charity is all about delivering high quality support, advice, knowledge and care for those affected by one of the genetic 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.
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.
We promote medical research through publication of relevant papers and assisting pharmaceutical companies with the development of and recruitment for clinical trials. We do not financially support medical research as such: this we consider to be the remit of pharmaceutical companies and scientific institutions considering the vast sums needed for these projects. However, we pride ourselves on being a flexible organisation and may consider applications for small amounts of medical research funding. We do, however, support Informational Research which we believe is vital for the development of medical research. This is an area we have considered at great length with our Board of Trustees, scientific advisors and pharmaceutical companies, and we are confident that the work we fund to drive forward best practices in treatment and prevention as well as the support we provide must continue to be our focus. Some do not agree with this approach; however, Alex TLC is resolute that what our limited funds can do for those living with leukodystrophy today far outweighs the need for us to divert these funds to medical research – we hope you will agree.
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.