Alex TLC

Alex TLC Alex, The Leukodystrophy Charity, or Alex TLC, provides invaluable support and information to people affected by leukodystrophies and their families.

Established in 2004, Alex, The Leukodystrophy Charity (Alex TLC) was founded by a mother whose sons, Alex and Ayden, had both been diagnosed with leukodystrophy. She recognised the severe lack of information and support available to families in her position and wanted to make sure that no one had to face leukodystrophy alone. Leukodystrophies are rare genetic disorders primarily affecting the whit

e matter of the central nervous system (i.e., the brain or spinal cord). They affect males and females of all ages and backgrounds, most notably children. The majority of leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In many cases, this sadly means a reduced or limited lifespan. There are over 100 known types of leukodystrophy identified to date, including some so rare they only affect one or two individuals.

Two brothers have been diagnosed with adrenoleukodystrophy (ALD) through the Generation Study: https://www.genomicsengla...
21/08/2026

Two brothers have been diagnosed with adrenoleukodystrophy (ALD) through the Generation Study: https://www.genomicsengland.co.uk/news/babys-ald-gene-discovery-through-genome-sequencing-leads-to-diagnosis-for-older-brother

A baby's rare genetic change was picked up and as a result has helped diagnose the same change in his older brother. This has allowed for vital early monitoring of both for a potentially life-limiting rare condition 🧬

The story has been featured on Good Morning Britain and in many national (The Telegraph and The Independent) and regional (The Standard, Yorkshire Live and Kent online) newspapers 📰

To find out more: https://alextlc.org/news/two-brothers-diagnosed-ald-generation-study/

It's with great sadness that we share the news that Matthew Revill has passed away, aged 39. Our thoughts are with his f...
21/08/2026

It's with great sadness that we share the news that Matthew Revill has passed away, aged 39.

Our thoughts are with his family, who shared these words: 'Matt, was impossible to forget. His charisma, humour and infectious laugh could light up any room, and life will never be quite the same without him. He leaves behind a lasting place in the hearts of all who knew and loved him, and will be remembered always.'

🩵Never Forgotten🩵

We're incredibly grateful to have been nominated by LandAid to receive a refurbished laptop and mobile SIM cards through...
20/08/2026

We're incredibly grateful to have been nominated by LandAid to receive a refurbished laptop and mobile SIM cards through Computers 4 Good's Tech 4 Reuse initiative. The laptop was presented to our CEO, Sara Hunt, by the Mayor of Lambeth, Paul Valentine.

For a small charity like Alex TLC, donations like these make a real difference. By reducing our technology costs, we're able to direct more of our resources towards supporting people and families affected by leukodystrophy.

A huge thank you to LandAid, Computers 4 Good and everyone involved in making this possible.

Our Director of Support, Karen Harrison, is attending an IWMD (leukodystrophy) clinic at University College London Hospi...
20/08/2026

Our Director of Support, Karen Harrison, is attending an IWMD (leukodystrophy) clinic at University College London Hospital today 🏥

Karen is there to offer support during the consultation, help with answering questions and to introduce the charity and offer ongoing support 💙

If we are already supporting the person we help by taking notes and we can meet with individuals prior to the appointment to think about questions they would like to ask 💬

To find out more about the NHS England IWMD service: https://alextlc.org/conditi.../nhs-patient-service-registry/

🎉 Great news from Western Australia! 👣Western Australia has launched newborn screening for X-linked adrenoleukodystrophy...
19/08/2026

🎉 Great news from Western Australia! 👣

Western Australia has launched newborn screening for X-linked adrenoleukodystrophy (ALD), helping affected children access specialist monitoring and care as early as possible.

Early diagnosis can make a real difference for families affected by ALD. While ALD is not currently included in the UK newborn screening programme, developments like this demonstrate the growing international recognition of the value of early detection.

Read more: https://alextlc.org/news/wa-launches-newborn-screening-for-x-ald/

💙 WEAR BLUE. SHARE WHY.This Leukodystrophy Awareness Month, help us spread awareness beyond the Alex TLC community.Choos...
18/08/2026

💙 WEAR BLUE. SHARE WHY.

This Leukodystrophy Awareness Month, help us spread awareness beyond the Alex TLC community.

Choose any day in September, wear blue and share a photo or video on your social media with a few words about why you’re taking part.

Start your caption with:
“I’m/we’re wearing blue for Leukodystrophy Awareness Month because…”

You could share why awareness matters to you, talk about your own experience, someone you love, or why you’re supporting Alex TLC.

📸 Tag us if you’d like us to share your post!

Find out more: https://alextlc.org/get-involved/wear-it-blue/

Join us on Thursday 27th August for our online community meeting from 11:30-13:00 (BST/UK time) 💬Our general monthly onl...
17/08/2026

Join us on Thursday 27th August for our online community meeting from 11:30-13:00 (BST/UK time) 💬

Our general monthly online community meetings are attended by anyone who is affected by leukodystrophy. This includes affected individuals, partners, parents and family members 💙

Please contact [email protected] if you would like to attend or you have any questions 📩

Promising news for the VWM community 💙Researchers at the Amsterdam Leukodystrophy Center, led by Prof. Marjo van der Kna...
17/08/2026

Promising news for the VWM community 💙

Researchers at the Amsterdam Leukodystrophy Center, led by Prof. Marjo van der Knaap, have published the first clinical evidence suggesting that guanabenz may help alter the course of vanishing white matter disease (VWM) in children.

Read more: https://alextlc.org/news/guanabenz-trial-hope/

Please vote for Alex TLC, it's quick and easy, and you don't have to give any details. Discount Promo Codes is a voucher...
16/08/2026

Please vote for Alex TLC, it's quick and easy, and you don't have to give any details.

Discount Promo Codes is a voucher code website that kindly donates 20% of their profits to charity every month, and we've been selected for the August vote 💙

How to vote:

Visit the Discount Promo Codes homepage: www.discountpromocodes.co.uk

On the right-hand side of the page (or at the bottom of the page on mobile), you will see the charity poll - click the circle next to ‘Alex TLC’ to cast your vote!

The poll is free, and everyone gets one vote.

You don’t have to use any vouchers or sign up to vote. However, every voucher used adds to the donation made to the winning charity.

15/08/2026

Want to hold a Wear it Blue day this September to raise vital awareness and funds?

Whether it's your workplace, school, community group or even a family gathering - it couldn't be simpler, wear blue and donate what you can to Alex TLC.

Everything you need is on our website: https://alextlc.org/get-involved/wear-it-blue/

Address

45 Peckham High Street
London
SE155EB

Opening Hours

Monday 9am - 6pm
Tuesday 9am - 6pm
Wednesday 9am - 6pm
Thursday 9am - 6pm
Friday 9am - 6pm
Saturday 9am - 6pm
Sunday 9am - 6pm

Telephone

+442077014388

Website

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