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In the media

In The Media
Press Releases
South London Press: Alex’s Dream to go to Disneyland
South London Press: Members of the Bad Girls cast supporting Alex’s Dream campaign
South London Press: Walking for Alex
South London Press: Thank you all for supporting Alex’s dream
What’s On TV: Oil of Life
South London Press: Sainsbury’s Local Charity of the Year Award
South London Press: Enterprising Sara Charity Shop No 3
Bristol Evening Post: Bristol dad driven by love to find a cure
Penge TownTalk: Sainsbury’s get it in the bag and supports local charity
South London Press: Tribute to Alex
Southwark News: Mum’s Battle to Help Families feature – Home, Part 1, Part 2, Part 3
South London Press (Letters section): Charity Shop in tribute to Alex
South London Press: Help us to find cure
South London Press: Mum’s new shop is dedicated to Alex
South London Press: It’s rare so we care
South London Press: Sara puts life into charity
South London Press: Creative team gets recycling for charity

South London Press: Sailing the world to raise cash for rare brain disease

Richmond and Twickenham Times: Jon Milne is on a quest to race across the seven seas

TV Appearances
BBC Medical Mysteries Documentary – YouTube page.
Channel 4 The Curious Case of the Clark Brothers documentary – YouTube page (non-UK users) or Channel 4’s YouTube page (UK users)

Patients and families
BBC: Leicester boy with ‘Lorenzo’s Oil’ disorder dies
Daily Mail: We thought our son needed glasses – then doctors revealed he had ‘Lorenzo’s Oil’ terminal brain condition
Daily Mail: I’d give my life to have my cheeky boy back.
Biochemist E-volution: Life with Adrenoleukodystrophy
Daily Star: Tragedy of ‘killer gene kids’ as fatal illness strikes two brothers and baby
Kapuso Show TV: Reporters Notebook: Eoryh Fuensalida (in Filipino)

Facebook

18 hours ago

ALD Life

We are delighted to announce that on the 15th May 2019 ALD Life will become Alex, The Leukodystrophy Charity (Alex TLC), able to support people with all Leukodystrophies, where no other support is available.

We’ll still be providing people with ALD and AMN the high-quality information, support, services and networks they already expect from us, but we want to help people with similar conditions and their families to have access to these too.

We will be sharing more information about the launch in the coming weeks, so stay tuned!
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