ALD Life
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ALD Life is a charity dedicated to promoting awareness, research and prevention of adrenoleukodystrophy (ALD).
ALD is a rare, genetic terminal brain disorder mainly affecting apparently healthy young boys between the ages of 4 and 10. Unless you know ALD runs in your family there are no warning signs until too late. ALD strips boys of their faculties within months leaving them blind, wheelchair bound and completely dependent. They are unable to talk or swallow and fed by tube. Sadly, affected boys usually pass away within months, sometimes years, of their diagnosis.
As it is a genetic disorder, some boys have younger brothers also affected; their diagnosis sadly prompted from their elder brothers’ misfortune. These boys are somewhat luckier in that they can take preventative measures. One of these is bone marrow transplant at symptom onset, but this is risky and not always successful. A low fat diet and intake of “Lorenzo’s Oil” (the subject of the 1992 film of the same name) may prevent symptoms but this is not proven.
The charity was initiated by the mother of two boys affected by the disorder. Determined to do something tangible for her own family and others, ALD Life was established in September 2004.
Its aims are:
* to raise public awareness of this little known yet devastating disorder
* support affected families through our website and yearly get togethers
* give grants to suitable research projects
* give grants to affected families
AT PRESENT THERE IS NO CURE FOR ALD
ALD Life Locality of Operation
- National
- Overseas
ALD Life Areas of Benefit
- Children and Youth
- Disabled
- Health
- Hospices
- Learning Disabilities
- Medical Research
- Medical Welfare
Address
PO Box 43642
London
SE22 0XR
Tel - 02087781144
Fax - 02087781144
Websites and Email Contact
The website of ALD Life is - http://www.aldlife.org
Number of Trustees
The total number at ALD Life is 5+
Donate Webpage Available
There are Donate Webpage Available at ALD Life
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