10th November 2025
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10th November 2025
30th October 2025
Our October 2025 edition is available. This month we will be sharing about our Community Weekend 2025 photos and presentations, festive campaign, our new counsellor and much more.
30th October 2025
We’e worked with IWMD clinicians to create a short survey to share your/your child’s experience of the Inherited White Matter Disorders (IWMD) Service.
28th October 2025
Our Research Summary for October is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
16th October 2025
The ABCD1 Variant Registry collects and records changes (variants) in the ABCD1 gene, which causes ALD and AMN.
26th September 2025
Our September 2025 edition is available. This month we will be sharing about Leukodystrophy Awareness Month, Twickenham Stadium Zip Wire, using easyfundraising on the Prime Big Deal Days, two press releases from Ionis and much more.
24th September 2025
Ionis Pharmaceuticals have announced positive topline results from the pivotal study of zilganersen in children and adults living with Alexander disease (AxD).
17th September 2025
Our Research Summary for September is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
11th September 2025
Have you accessed NHS Wheelchair Services? Share your experience to add to Whizz Kidz’s research
28th August 2025
Our August 2025 edition is available. This month we will be sharing about virtually attending our community weekend, helping us hit 100 regular donors, one to one support and much more.
18th August 2025
Our Research Summary for August is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials, including article summaries and direct links to websites and articles.
7th August 2025
Azafaros announcement of first patient dosed in global pivotal clinical trial phase 3 program for late infantile/juvenile onset NPC and GM1/GM2 gangliosidoses.