Stay up to date
28th May 2026
We have sent out the May edition of our monthly news round-up. This month we will be sharing about a job opportunity within the charity, upcoming online community meetings, the devastating flood at one of our charity shops and ways you can get involved.
30th April 2026
We have sent out the April edition of our monthly news round-up. This month we will be sharing about upcoming online group meetings, celebrating 2 years of Alex TLC’s 50/50 Cash Draw, one to one support and our online shop.
29th April 2026
Our Research Summary for April is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
23rd April 2026
Please complete our Impact Survey 2026 and share your feedback. For anyone who has a connection with Alex TLC through their/the person they care for leukodystrophy.
16th April 2026
Our children’s book to support the siblings of children diagnosed with CCALD is now available in English, Spanish and German.
14th April 2026
A community member would like to know if anyone uses any equipment, devices or phone apps for seizure alerts.
26th March 2026
We have sent out the March edition of our monthly news round-up. This month we will be sharing about events we’ve been attending, your chance to have your say on supporting us and Ask our Community.
10th March 2026
Ask our community provides an opportunity to ask our community members for information, suggestions, recommendations, or feedback about their experiences.
3rd March 2026
We attended the Society for Endocrinology – British Endocrinology Society (SfE BES) conference.
3rd March 2026
Our next online meeting will be taking place on Thursday 26th March 11:30-13:00 (GMT – UK time).
25th February 2026
Our CEO, Sara, attended the Rare Disease Day 2026 Westminster Parliamentary Reception on 24th February.
24th February 2026
We have sent out the February edition of our monthly news round-up. This month we will be sharing about Rare Disease Day, our counselling service, lighting up our stained glass window and newborn screening updates.
