27th March 2024
Our News Round-Up
The March edition of our monthly news round-up has been sent out today. It includes charity news, ways to get involved and ways to support us.
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.
27th March 2024
The March edition of our monthly news round-up has been sent out today. It includes charity news, ways to get involved and ways to support us.
26th March 2024
We are excited to announce that our Community Weekend 2024 will be taking place from Friday 11th to Sunday 13th October at Park Regis Birmingham hotel!
26th March 2024
Our Research Summary for March 2024 is ready to view. It includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
22nd March 2024
Our online community meetings provide a friendly space for our community. They are held on zoom and everyone is welcome to join.
22nd March 2024
Forge Biologics have shared a press release with promising news for those affected by Krabbe Disease. We have included the the full press release to find out more.
19th March 2024
We are sharing our Ask the Community for March. We’d like to hear from those who use hyoscine hydrobromide patches and whether they are having any difficulties getting hold of them.