Stay up to date
6th January 2026
Ionis has opened an Expanded Access Program (EAP) for people with Alexander disease to access zilganersen in the United States. They have released a community statement with further information.
30th December 2025
Thank you to everyone in our community who have applied for a rare patient passport – here is a quick update about the project:
28th December 2025
Our next online meeting will be taking place on Thursday 22nd January 11:30-13:00 (GMT/UK time).
23rd December 2025
Each month we are introducing professionals from the NHS England IWMD team. Dr Lydia Green is a Paediatric Neurologist at Leeds Children’s Hospital.
22nd December 2025
Our December 2025 edition is available. This month we will be sharing about our festive appeal, our Community Weekend 2026, our Support Services Impact Report 2025 and Give Up to Give Back in 2026.
19th December 2025
Our Research Summary for December is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
18th December 2025
Secretary Kennedy Metachromatic Leukodystrophy to Newborn Screening Recommended Uniform Screening Panel in US.
16th December 2025
Connecting Together involves us putting families and individuals in our community in contact with each other.
15th December 2025
Our Support Services Impact Report 2025 is available to view.
This impact report was based on the findings from our Support Services Impact Survey which gathered the views of those who have accessed support within the charity.
11th December 2025
Our CEO, Sara, attended The Childhood Dementia Awareness Raising event in Scottish Parliament.
10th December 2025
We had some great ideas for over the festive period. These included festive gifts for symptomatic children and fun inclusive activities for the whole family to share.
9th December 2025
At Alex TLC, we believe no one should face leukodystrophy alone. But right now, our resources are stretched thin.
