Inspired by our son Nicholas's vision, we are excited to announce our First Annual Run for ALD, Cure the Boys on November 18, 2017 at Creve Coeur Park in St. Louis, Missouri. We are using this site to raise awareness and funds above and beyond race registration for ALD research at the University of Minnesota. Money raised through this site will go directly to the ALD Research Fund of the University of Minnesota Foundation.
Nicholas is twelve and received a bone marrow transplant at the U of M in September of 2016 to successfully stop the progression of the cerebral form of adrenoleukodystrophy (ALD). ALD is a genetic x-linked disorder in which boys who have it are unable to metabolize very long chain fatty acids. This can affect the central nervous system in some boys by destroying the myelin sheaths that protect the nerves. In cerebral ALD, this occurs in the brain and can cause rapidly progressive neurological issues and eventually death. Currently, the only effective treatment option for boys with early-stage cerebral ALD is a bone marrow transplant. Nearly 1 in 17,000 boys are born with this cerebral form, but often go undetected without newborn screening. Early diagnosis is essential and progress is being made in adding ALD to the newborn screening panel in some states but work still needs to be done to get it passed in all states.
Julie, Nicholas's mom, is a carrier of the disease and therefore, we had Nicholas tested at birth and monitored yearly through brain MRIs. Once detected in the very early stages, Nicholas was recommended immediately for transplant. Thanks to the expertise of his doctors (Dr. Wes Miller and Dr. Troy Lund to name a couple) at the U of M, his umbilical cord blood match, and early intervention, Nicholas is in good health and his disease has been halted in his brain. It has saved his life! We hope to help other boys and families who are faced with the devastating diagnosis of ALD by supporting the research of the U of M doctors to discover methods for earlier detection of the disease, acquire better understanding of the role of bone marrow transplant as an intervention, and develop safer, more effective therapies that will improve outcomes and save lives.
We thank you immensely on behalf of all ALD families for your support!
Further inquiries can be emailed to Julie at RunforALD@yahoo.com.
Race info. and registration can be found at : www.fleetfeetstlouis.com/racing/run-for-ALD