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2nd Annual ride through the hills of West Virginia. Ride leaves at 11am from Archie's Bar & Restaurant in Morgantown, WV. Join us back at Archies for live music by Allied Brothers, 5th Gear and Iron City Hooligans from 2:30-6pm. Prizes will be drawn all day. Check out www.aidansride.webs.com for updates and list of sponsors and prizes. 'like' us on facebook and invite your friends! It's halloween weekend so prizes will go to the best dressed!
All proceeds benefit the Aidan Jack Seeger Foundation is a non-profit 501(c)3 charity run 100% by volunteers with EVERY donation directly benefiting our mission to advocate for EVERY state to screen newborns for ALD, help families affected by ALD and raise awareness.
Aidan Jack Seeger Foundation:
ALD is an X-linked genetic disease affecting 1/17,000 people. ALD destroys the myelin sheath in the brain and affects all neurological functioning: the ability to see, hear, move and eat are taken away leading to a vegetative state and eventually death. ALD usually manifests in boys between the ages of 4 – 10. The disease starts manifesting in physical symptoms, such as attention deficit, vision problems, clumsiness, forgetfulness, and hearing loss. The disease progresses silently and is often not diagnosed until symptoms begin. Once diagnosed due to physical symptoms it is usually too late for treatment.
Therefore, early detection is the KEY for treatment. We have witnessed the miracles of children who have undergone bone marrow transplant before the onset of symptoms and are perfectly healthy today. The only options to possibly stop the progression of the disease is a bone marrow transplant and now the availability of gene therapy is the promising next step for these families.
Early detection will allow these boys to be monitored every 6 months with an MRI, treat their adrenal insufficiency, and give them the best chance for a normal life. With Newborn Screening in place these children can be monitored and saved from the affects of this devastating disease.