Alex TLC

Registered Charity Number 1106008

Total raised
£5589.00 + £803.75 Gift Aid = £6392.75
+ £62.50 Gift Aid
+ £741.25 Gift Aid

About Alex TLC

Alex TLC supports sufferers of all leukodystrophies and set up by Sara Hunt, a single mum of two sons diagnosed with adrenoleukodystrophy (ALD), in 2004. ALD is a rare, terminal genetic brain disorder affecting apparently normal and healthy males aged 4 to 60, causing complete loss of function and death usually within a year of diagnosis. AMN, also caused by the ALD gene, causes debilitating mobility problems of varying degrees for both adult males and females.

Alex TLC is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognised centre of excellence for people affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in 2004.

Due to popular demand, we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity.

One of our most successful events is our Community Weekend bringing geographically isolated ALD and AMN sufferers together to support and advise each other as well as have a weekend away from the rigours of dealing with the devastation an ALD diagnosis brings. The event also provides an opportunity for doctors, researchers and scientists to update the community and develop ideas together.

Many of the very rare leukodystrophies have no support organisation working for them - Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.

Get fundraising!

If you'd like to run, swim, bake (or do anything else to raise some money), click the button below to get started. It's quick and easy to register and by doing so here at, you can be sure that every penny raised will reach Alex TLC.

Current fundraising pages

Daniel's Three Peaks Challenge for Alex TLC

In July 2020, I will be attempting the Three Peaks Challenge for Alex, The Leukodystrophy Charity (known as Alex TLC). The Three Peaks Challenge consists of summiting the highest points of Scotland (Ben Nevis, 1,345m), England (Scafell Pike, 978m) and Wales (Snowdon, 1,085m). This particular challenge will take place over the course of 24 gruelling hours. I have experience of mountain trekking and will not underestimate this challenge. At the end of the day, the difficult nature of this challenge will be a small price to pay for helping the Alex TLC family.In 2018, my brother Matthew was diagnosed with a rare genetic disease called Adrenomyeloneuropathy (AMN). His continued battle has impacted us all, but his strength and perseverance in the face of adversity is truly humbling to see. In August 2019, Matthew raised £1,084.33 for Alex TLC undertaking a 5 mile walk in the New Forest – a fantastic and highly respectable achievement. Alex TLC is a wonderful charity that is close to our family’s heart. Matthew has been an active volunteer and valued member of the Alex TLC network, assisting with their social media channels and designing custom Alex TLC tees (I hope to wear one of these on the challenge!).AMN is just one disease from a family of diseases called Leukodystrophies. So far over 50 have been discovered. AMN, in particular, is caused by mutations in the ABCD1 gene, and is inherited in the X-chromosome. It affects both men and women, but men to a more severe extent. For more information on the fantastic work Alex TLC do, click this link, or paste into your browser. Further information on the work of Alex TLC will be available on their charity profile linked with this page.Thanks for taking the time to read my fundraising page.

Daniel Wellman

  • Health
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Current appeals

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