26th July 2024
My Neuro Survey 2024
My Neuro Survey is to help better understand support individuals affected by neurological conditions. It’s completely anonymous and takes around 20 minutes to complete.
Helping to cope, helping to hope
Established in 2004, Alex TLC provides invaluable support and information to people affected by leukodystrophy.
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 for all those with leukodystrophy.
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.
26th July 2024
My Neuro Survey is to help better understand support individuals affected by neurological conditions. It’s completely anonymous and takes around 20 minutes to complete.
25th July 2024
How does your rare disease impact your everyday life? Complete Rare Barometer survey and share your experiences. The survey is open to people living with a rare disease and their family members from any country in the world
23rd July 2024
Important retrospective cohort study characterising mortality and the burden of illness in men with AMN in the US. Abstract and article are available to read.
22nd July 2024
World Brain Day is on Monday 22nd July 2024. As part of World Brain Day our CEO, Sara Hunt, is sharing her story to raise awareness of the importance of early screening which saved her youngest son’s life.
19th July 2024
Our BACP-registered counsellor, Jenna, provides free counselling sessions for our adult community members.
19th July 2024
We are looking for an Assistant Shop Manager. The role is full time and will be based in our 5 charity shops in South East London. To be considered for the role you must have previous retail experience.