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Elle has had it put in special place in a park she used to visit in Sheffield, so if you ever see it please take a seat and think of Joe. Please find a couple of photos that Elle took of the bench
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Please also help raise money for ALD life by donating money through the just giving website. Please click on the ALD Life logo above and it will open the just giving website in a new window. |
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What is ALD?
Adrenoleukodystrophy (ALD) is a rare, inherited metabolic disorder. In this disorder, the fatty covering (myelin sheath) of nerve fibres in the brain is lost, and the adrenal gland degenerates, usually leading to progressive neurological disability and death. A good portrayal of the effects of ALD on both the victim and family is the film “Lorenzo’s Oil”. It accurately describes the deterioration of a young boy with the disorder and resultant problems. The film does intimate that a cure (Lorenzo’s Oil) was found. Unfortunately this is not the case for those already with symptoms, although the oil is now a recognised and hopefully preventative treatment for all boys under 6 with the gene who are not presenting symptoms. It is now also being tested as a preventative treatment for men with adrenomyeloneuropathy (AMN) and females with symptoms. Description thanks to ALD LIFE Web address: www.aldlife.org --------------------------