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The Aidan Jack Seeger Foundation was established to address the need for information and newborn screening with respect to Adrenoleukodystrophy. We strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of the disease.-
To advocate for ALD newborn screening in every state. To gather and provide current, functional information and provide financial support to families of children with ALD. To fund research efforts that will identify new treatments, therapies and ultimately, a cure for ALD. To raise awareness of ALD
Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 17,000 people. As it is an X-linked genetic disease, 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, vision problems, or coordination issues. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness, deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to a vegetative state or death usually within 2-5 years of diagnosis. Demyelination is the stripping away of the fatty coating that keeps nerve pulses confined and maintains the integrity of nerve signals. This process inhibits the nerves ability to conduct properly, thereby causing neurological deficits. Demyelination is an inflammatory response and nerve cells throughout the brain are destroyed.