21st August 2026
Stay up to date
21st August 2026
18th June 2026
Sixteen-month-old Eliyas is affected by a rare leukodystrophy called TUBB4A-related leukodystrophy. Our Director of Support, Karen, was one of the professionals speaking during the ITV news interview.
12th February 2026
Several news articles have been published which highlight the importance of newborn screening for MLD from a family’s perspective and in a professional’s opinion.
30th January 2026
Our Director of Support, Karen, and Research Analyst, Kristina, attended the BPNA annual conference. We had a stand at the event, presented a poster and presented as part of a special interest group.
11th December 2025
Our CEO, Sara, attended The Childhood Dementia Awareness Raising event in Scottish Parliament.
10th October 2025
You can still share your leukodystrophy journey as part of our life with leukodystrophy which will continue throughout the year.
27th September 2025
Karen presented at the ‘Leukodystrophies: Novel perspectives on treatments and disease monitoring’ course in Paris held by Professor Fanny Mouchel and attended by many leukodystrophy specialists.
3rd September 2025
We have lots of locations lighting up blue in September for Leukodystrophy Awareness Month.
2nd September 2025
Leukodystrophy Awareness Month takes place every year throughout the whole of September. We have shared ways you can get involved!
25th August 2025
It’s Leukodystrophy Awareness Month in September – the month provides an opportunity to raise awareness of leukodystrophy. Find out how you can get invovled.
15th August 2025
Share your leukodystrophy journey for our ‘Life with leukodystrophy campaign’ and help us to shine a light on the far-reaching impact of leukodystrophy.
24th July 2025
Fight for Ordinary is a new campaign, setting out a positive vision for a reformed system for children and young people with special educational needs.