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)


20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at or ‪404-778-8518‬. ...

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