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.
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.
18th June 2025
We join European Patients’ Forum and EURORDIS-Rare Diseases Europe in calling on EU decision-makers to protect patient voting rights in the revision of EU pharmaceutical legislation.
17th June 2025
This film documents the PET event ‘Preimplantation Genetic Testing: Barriers to Access‘, supported by the D’Oyly Carte Charitable Trust – exploring the barriers to accessing preimplantation genetic testing.
13th June 2025
We are excited to announce that we are teaming up with ALD Connect to host a community building call on Sunday 22nd June at 3pm.
13th June 2025
We have two online meetings we have coming up this month. Our usual online community meeting and an additional meeting for parents of affected children.
10th June 2025
A South East Technological University (SETU) research team has secured significant international funding for its work in gene therapy for Canavan disease.
10th June 2025
Rare Revolution Magazine are looking for parents or caregiver of someone living with a rare disease or condition to share their stories.
