Stay up to date
6th July 2026
For the first time, the lived experience of Alexander Disease has been documented and formally entered into the record drug developers, regulators, and researchers will reference for years.
30th June 2026
We have sent out the June edition of our monthly news round-up. Please sign up to receive correspondence from us including our news round-up.
30th June 2026
Yaya Foundation are holding an online call on Sunday 12th July at 7pm. The call will include a discussion led by Dr. Valerie Gregor and family call.
30th June 2026
How has Alex TLC made a difference to you or your family? Share your story to raise awareness.
25th June 2026
Ionis have recently released a community statement to the AxD community regarding their zilganersen program and the recent partnership with Recordati.
23rd June 2026
Our Research Summary for June is ready to view. Our Research Summary includes information about recent leukodystrophy research and clinical trials.
22nd June 2026
Our children’s book for ALD is now available in French. Our children’s book is to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD).
19th June 2026
A 6-year-old Riaan has received an experimental gene therapy for Cockayne Syndrome at New York-Presbyterian Komansky Children’s Hospital in April.
19th June 2026
We have a community member living in Scotland who is looking for recommendations of neurologists with ALD experience.
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.
16th June 2026
11th June 2026
Our accredited counsellor, Mel, provides free counselling to our adult community members. She also offers emotional wellbeing phone calls to those who need someone to talk to.
