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.

The final total is in! Our amazing TCS London Marathon runners raised an incredible ยฃ16,684.56.This significant amount c...
08/06/2026

The final total is in! Our amazing TCS London Marathon runners raised an incredible ยฃ16,684.56.

This significant amount could fund:

100 welcome packs for new beneficiaries, plus
200 hours of tailored 121 support
and 2 regional face to face activities.

A huge thank you to Jess, Andy, Colin, Toby and Dave (Pottsy) for their dedication, determination and fundraising efforts.

You should all be so proud of everything you've achieved and we are so grateful ๐Ÿ’™

07/06/2026

People affected by leukodystrophy rely on our Community Weekends to connect with others who understand, learn from experts about symptom management and research, and create memories that last long after the weekend ends ๐Ÿ’™

Your support is crucial to ensure we can continue to host these vital events; please donate if you can: https://www.justgiving.com/campaign/alextlc-cw

Would you like the opportunity to share your experiences and help shape rare disease policy?Join us for a workshop in a ...
07/06/2026

Would you like the opportunity to share your experiences and help shape rare disease policy?

Join us for a workshop in a box to help gain a deeper understanding of our communityสผs priorities and challenges providing vital evidence to ensure future rare disease policy is built around your needs ๐Ÿ’™

Feedback and insights will directly inform Genetic Alliance UK Future for Rare campaign ๐Ÿฆ“

To find out more: https://alextlc.org/news/workshop-in-a-box

06/06/2026

It's

Today we're saying a big thank you to Cuong, who has been volunteering in our charity shops for 6 years!

Thank you for your dedication, Cuong!

The NHS England IWMD Diagnostic and Management Service aims to implement national standards of care for patients of all ...
06/06/2026

The NHS England IWMD Diagnostic and Management Service aims to implement national standards of care for patients of all ages with an IWMD (leukodystrophy) and improve the NHSโ€™s understanding of care for these conditions

You may be referred to the IWMD service if they suspect you have a leukodystrophy, or if already diagnosed, to review your treatment or current care plan ๐Ÿ“‘

We were invited to represent patient voice on the development committees and we attend clinics to meet new patients and their families ๐Ÿ’™

To find out more: https://alextlc.org/condition-management/nhs-patient-service-registry/

๐Ÿ’™ Help us turn September BLUE ๐Ÿ’™September is Leukodystrophy Awareness Month, and we'd love you to hold a Wear it Blue Day...
06/06/2026

๐Ÿ’™ Help us turn September BLUE ๐Ÿ’™

September is Leukodystrophy Awareness Month, and we'd love you to hold a Wear it Blue Day for your school, workplace or community group.

With summer holidays fast approaching, now is the perfect time to get involved and secure a date in the diary ๐Ÿ“…

By wearing blue, raising funds and sharing awareness, you'll help shine a light on leukodystrophy and support families affected by these rare conditions.

Find out more and sign up today: https://alextlc.org/fundraise/fundraising-ideas/wear-it-blue/

05/06/2026

It's !

Today we're saying a big thank you to Rowan who has been volunteering in our Penge charity shop for the past 3 months.

'I enjoy conversations with customers and feeling like part of the [charity]'

Thank you, Rowan!

It's !Today we're saying a big thank you to Noman, who has been a Research Volunteer with Alex TLC for 6 months now, as...
04/06/2026

It's !

Today we're saying a big thank you to Noman, who has been a Research Volunteer with Alex TLC for 6 months now, assisting Kristina, our Research Analyst to produce our monthly Research Summaries.

Thank you Noman, you are amazing!

Today we're saying a big thank you to Andrew, who raised ยฃ768.27 plus Gift Aid by completing the Leeds Marathon for his ...
04/06/2026

Today we're saying a big thank you to Andrew, who raised ยฃ768.27 plus Gift Aid by completing the Leeds Marathon for his Nephew, who was recently diagnosed with adrenoleukodystrophy ๐Ÿ’™

Thank you, Andrew, what an achievement!

03/06/2026

It's !

Ken has been volunteering in our Walworth Road charity shop for a year now. He enjoys learning new skills, working with the Alex TLC Team and meeting customers.

Thank you, Ken, we couldn't do it without you!

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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