Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 18 000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and to control our muscles. It knows no racial, ethnic or geographic barriers. The most devastating form of ALD appears in childhood, generally between the ages of four and ten years old. Normal, healthy boys suddenly begin to regress. At first, they simply show behavioral problems, such as withdrawal or difficulty concentrating. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to either death or permanent disability, usually within 2 to 5 years from diagnosis. Today, new scientific knowledge offers hope for the successful treatment and prevention of ALD. But it is urgent that we invest in research that will advance new therapies, as well as new tools for early diagnosis and educational campaigns that will raise awareness so that children with ALD can be identified as early as possible, while there is the best hope of a beneficial treatment. Advancing such research is the goal of the Stop ALD Foundation. Like a venture capital firm, we identify gaps in the development process, seek out creative solutions to fill those gaps, and deliver the resources that can develop these great ideas into concrete projects, and projects into therapies that can transform the lives of children with ALD and their families.
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