
08th October 2025
We are attending Manchester Rare Disease Showcase
Our Research Analyst, Kristina, will be attending Beacon’s Manchester Rare Disease Showcase on 26th November.
Helping to cope, helping to hope
Established in 2004, Alex TLC provides invaluable support and information to people affected by leukodystrophy.
Formerly ALD Life, for people affected by adrenoleukodystrophy (ALD) and adrenomyeloneuropathy (AMN), we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity.
There are more than 100 different known types of leukodystrophy, including some so rare they only affect one or two individuals. We are the only charity in the UK that provides support and information to people affected by any of the leukodystrophy conditions worldwide.
Leukodystrophies are genetic disorders primarily affecting the white matter of the central nervous system (ie. the brain or spinal cord). The majority of leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In some cases, they may be life limiting. These conditions affect males and females of all ages and ethnic backgrounds, most notably children.
We are proud of the information and support we provide to our community members.
Over a year period we provide:
We hold an annual Community Weekend and our 2024 event was attended by over 180 community members and professionals.
Our website is an important resource for individuals affected by leukodystrophy and professionals. Over a year period we have over 49,900 visits to our website, with our condition pages being the most popular pages receiving over 17,500 visits.
Have you or a family member been diagnosed with a leukodystrophy?
We understand the information you have received may be new and confusing, and it may be difficult to know where to go for further advice and information.
The new NHS England IWMD Diagnostic and Management Service is for all ages. It strives to implement national standards of care for patients with an IWMD (leukodystrophy) and improve the NHS’s understanding of care for these conditions.
We are the patient organisation representative for the service and registry. We are working alongside NHS professionals, including consultants and nurses, to support the development of these services. We attend clinics to provide information and support to individuals and family members.
Those affected by leukodystrophy often face fear, isolation, and uncertainty. Right now, just 33 people give regularly to help us stand beside them. We want to grow that number to 100 regular donors, and we’re asking you to join us.
Regular donations cut down on administration costs and provide us with a reliable income to plan our future projects and services. Even a small amount each month really makes a big difference to our work.
You can help us to raise vital funds and increase awareness of leukodystrophies.
The majority of people aren’t aware of these rare diseases and their impact on individuals and their families. With your help, however small, we can make a real difference.
These pages are packed full of ideas and inspiration for the various ways you and/or your organisation can get involved and lend your support.
Discover how you can get involved today.
We are constantly updating our news section with everything of interest to people affected by leukodystrophies.
You’ll find information about our latest work, health and research news, updates for professionals, and more.
08th October 2025
Our Research Analyst, Kristina, will be attending Beacon’s Manchester Rare Disease Showcase on 26th November.
07th October 2025
We’e worked with IWMD clinicians to create a short survey to share your/your child’s experience of the Inherited White Matter Disorders (IWMD) Service.
29th September 2025
Our next online community meeting will be taking place on Tuesday 21st October 11:30-13:00 (BST). The meeting is open to anyone affected by leukodystrophy.
27th September 2025
Karen presented at the ‘Leukodystrophies: Novel perspectives on treatments and disease monitoring’ course in Paris held by Professor Fanny Mouchel and attended by many leukodystrophy specialists.
26th September 2025
Families being offered maternity care at Sunderland Royal Hospital and South Tyneside District Hospital are among those being invited to take part in the Generation Study.
26th September 2025
Our September 2025 edition is available. This month we will be sharing about Leukodystrophy Awareness Month, Twickenham Stadium Zip Wire, using easyfundraising on the Prime Big Deal Days, two press releases from Ionis and much more.