Our son Nicholas had a life-saving bone marrow transplant in Sept. 2016 thanks to early detection of ALD, umbilical cord blood donation, and the amazing team at the University of Minnesota Children's Hospital. We organize and host Run for ALD, Cure the Boys 5K run and 1 mile walk family event (this year on Nov. 17, 2018). Register online at http://www.fleetfeetstlouis.com/racing/run-for-ALD
Through this event and Knockout ALD, we are raising awareness and funds to support life-saving research. Researchers at the Univ. of Minnesota Leukodystrophy Center are working to set up an ALD registry to gather data on newly diagnosed ALD boys and improve treatment for boys fighting adrenoleukodystrophy in the hopes of one day finding a cure. Find out more about their work at https://www.pediatrics.umn.edu/divisions/blood-and-marrow-transplantation/leukodystrophy-center/give
To learn more about the disease ALD, check out www.ALDconnect.org
There are a variety of ways to help the ALD cause in addition to signing up for Run for ALD. We are in of need event sponsors and volunteers before, during, and after the run. You can also help get newborn screening passed in all states to identify ALD boys early by going to www.aidanslaw.org to sign the petition. You can join the bone marrow registry to help save lives at www.BetheMatch.org and spread the word about umbilical cord blood donation as well. We're excited to have you join the team to help Knockout ALD and Cure the boys!
Whether you help through monetary donations, volunteering your time at Run for ALD, signing Aidan's Law petition for newborn screening, or becoming a bone marrow donor, thank you. We couldn't accomplish our goal of Curing the Boys without your help. We are so grateful for your prayers, support, and generosity!