
18th September 2025
Community Ask for September
We are sharing our community for September of a community member who is asking for recommendations for a plane seat cushion.
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 September 2025
We are sharing our community for September of a community member who is asking for recommendations for a plane seat cushion.
17th September 2025
Our Research Summary for September is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
16th September 2025
11th September 2025
Have you accessed NHS Wheelchair Services? Share your experience to add to Whizz Kidz’s research
05th September 2025
We will be live streaming presentations from our Community Weekend in September. For those unable to attend in person, we are offering the option to attend virtually for free.
03rd September 2025
We have lots of locations lighting up blue in September for Leukodystrophy Awareness Month.