Give Comfort this Christmas

for Alex TLC

£355.00 + £57.50 Gift Aid = £412.50
Donated to Give Comfort this Christmas’s £1000.00 Goal

The ALD Life Support Service Team are an invaluable source of information, advice, advocacy and financial assistance for those affected by ALD and AMN. Over the years they have been integral in supporting numerous individuals and families lost in the devastation of a new diagnosis, disease progression or bereavement, delivering our tailored packages of support and developing comprehensive information for sufferers and medical professionals.

One family's quote sums up how our support impacts our beneficiaries “We would be lost without ALD Life”.

Can you help us maintain these vital services? Christmas can be a particularly difficult time of year for our beneficiaries, so please help us today and give comfort to those with ALD and AMN this Christmas.

Take a look at our Case Studies for some real insight into our work and those we support.

The charity

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.

Registered charity (no. 1106008).

Find out more about Alex TLC

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Our Sponsors support the platform in kind by providing access to commercial and professional services on a pro-bono basis; through staff secondment and access to volunteers; or by making financial contributions to cover our operating costs.

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