11th March 2025
Face to face meet up in Leeds
We are excited to announce that we have a face to face meet up planned in Leeds. It will be taking place on Tuesday 15th April at Leeds City Museum from 10:30 until 14:30.
Stay up to date
11th March 2025
We are excited to announce that we have a face to face meet up planned in Leeds. It will be taking place on Tuesday 15th April at Leeds City Museum from 10:30 until 14:30.
7th March 2025
Our next online community meeting is on Tuesday 18th March 12:00-13:30. The meeting is held by Karen Harrison, our Support Services Manager, and Jenna Jones, our Counsellor.
5th March 2025
We are excited to share with you the date of our next Community Weekend. The event will be taking place from Friday 19th to Sunday 21st September at Hilton London Wembley. Remember to put the date in your diary!
5th March 2025
Our Community Weekend Report 2024 is ready to view. The impact report was based on an online feedback survey which attendees completed.
27th February 2025
Have you recently received a diagnosis of leukodystrophy? Or do you need support living with the condition? Our Support Services Manager, Karen Harrison, provides one to one support to individuals and families affected by leukodystrophy.
26th February 2025
Our February 2025 edition is available. This month we will be announcing our Community Weekend 2025, information about a face to face community meet up in Leeds, ways to support us including Zipslide the Clyde, and many more updates!
25th February 2025
With so few available treatments, we understand that research is a significant priority and source of hope for the leukodystrophy community. Find out about our role in research.
24th February 2025
Watch our ‘In conversation with…’ video series on our YouTube channel. There are nine conversations hosted by our Support Services Manager, Karen Harrison, with individuals and families affected by leukodystrophy.
14th February 2025
Don’t forget to join our ‘Alex TLC Community’ Facebook group. There are 157 members from our community. This includes affected individuals, partners, parents, carers and family members.
14th February 2025
Are you interested in accessing our counselling service? Our BACP accredited counsellor, Jenna Jones, offers up to 8 free counselling appointments on a weekly basis.
11th February 2025
We two online meetings we have coming up this month. An online community meeting for everyone to attend and a meeting for carers of affected adults.
28th January 2025
Our January 2025 edition is available. This month we are sharing about our plans for Rare Disease Day, our attendance at the BPNA conference earlier this month and how you can support us by telling your employer about Alex TLC.