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.
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.
03rd December 2024
Our CEO, Sara Hunt, and Support Services Manager, Karen Harrison, attended the ELA International Symposium on Monday 2nd and Tuesday 3rd December 2024. It was an informative two days focusing on ‘Ethics for the benefits of patients’.
03rd December 2024
We would like to share the feedback we received from our Community Asks in November. We had two asks last month and have tips, suggestions and experiences from our community.
30th November 2024
Each month we will be sharing facts about leukodystrophy to help raise awareness of the condition. Even though it is a rare condition, it still affects a number of people around the world with Adrenoleukodystrophy (ALD) and Metachromatic Leukodystrophy (MLD) being the most prevalent types.
28th November 2024
We will be sending our the November edition of our monthly news round-up. It includes charity news, our community and ways to get involved.
26th November 2024
We are one of the many patient groups partnering with CamRARE bring their ‘This Is Me’ Rare Patient Passport to our community. The patient passport provides a tool to communicated your/your loved one’s rare condition to new people.
25th November 2024
Our Research Summary for November 2024 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.
