Where your money goes

Alex TLC does its utmost to ensure your money is spent wisely and in the areas of need identified through our Impact Reports. Our charity shop profits are used towards staff salaries and core costs and we endeavour to diversify our income streams to ensure sustainability. As well as the generous donations from our supporters, we also have a team of voluntary grant fundraisers who work tirelessly for us applying for grants from various trusts. Our donors and volunteers are an essential part of the success of Alex TLC and we welcome applications year-round from those wishing to support us and have a variety of opportunities available.

Alex - The Leukodystrophy Charity

The following are just some examples of how your donations make an enormous difference to those affected:

  • £15 funds the distribution of vital information to someone newly diagnosed with a leukodystrophy
  • £50 funds two hours of telephone support to someone with a leukodystrophy who has nowhere else to turn
  • £100 funds a dedicated support session at home to address fears, concerns and questions from the whole family
  • £300 funds a grant for a person with leukodystrophy to access equipment or therapies which are not available on the NHS
  • £600 could fund one person to attend our Community Weekend
  • £1,000 could deliver dedicated one to one support and advocacy for a newly diagnosed family during the first year of their leukodystrophy journey
  • £2,500 could fund the translation of our website and condition-specific information leaflets into other languages and increase our reach internationally as well as to new minority communities in the UK
  • £5,000 could fund a Researcher to undertake a three-month research project which will inform, improve and develop our support services.

Your support helps us to reach more people with our valuable service. Please donate now or see how you can get involved to raise awareness, volunteer or fundraise for us.

Funding Research

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, we recognise that our community are keen for us to support research in a more tangible way, and we launched a new research strategy in 2023 to directly address this.

As part of this strategy we:

• can provide financial grants for research projects – contact info@alextlc.org for more information
• will hold an annual research funding campaign starting June 2024
• assist Leukolabs to apply for research grants from organisations such as the National Institute for Health and Care Research
• commission qualitative research with organisations such as Sheffield Hallam University

Alex - The Leukodystrophy Charity