Aidan Jack Seeger Foundation
Aidan Jack Seeger Foundation was established to address the need for information and newborn screening with respect to Adrenoleukodystrophy. In addition, 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 and increasing the probability of early detection and treatment.
Aidan and our family have been blessed with support from all over the world. Aidan’s Facebook page quickly reached over 20,000 members who went on this journey with us. The letters, cards, gifts made our days brighter and made us feel that although the majority of these people never knew us or our son they were praying for his recovery. The family and friends who held fundraisers allowing us to spend every precious moment with our son are priceless. The Aidan Jack Seeger Foundation is a tribute to our hero Aidan who suffered enormously and showed us the meaning of kindness, hope and most of all love. Our hope is to help save future boys and their families this unimaginable suffering.
What is 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.
The Aidan Jack Seeger Foundation is a
non-profit 501(c)3 organization.
We are a charity run completely
by volunteers with every donation
directly benefiting our mission.
All Proceeds go to the AJS Foundation to help #savetheboys battling ALD. To Learn More about ALD and how you can help #savetheboys, visit Aidanhasaposse.org.