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. In Nov. 2019, we held our 3rd Annual event near St. Louis with over 300 participants including ALD families and Dr. Troy Lund of the Univ. of Minnesota.
Through this event and other opportunities, we raise awareness and funds to support life-saving research at the University of Minnesota, one of the largest transplant centers in the world and a leader of ALD Research. The Univ. of Minnesota Leukodystrophy Center is working to identify the cause and predictors of active cerebral ALD in order to better diagnose 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 adrenoleukodystrophy, 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 hope to help get newborn screening passed in all states to identify ALD boys early. Visit www.aidanslaw.org to find out more and sign the petition. You can join the bone marrow registry to help save lives by signing up for a swab kit by copying & pasting this link: join.bethematch.org/KnockoutALD and spread the word about umbilical cord blood donation as well. When shopping on smile.Amazon.com, choose Knockout ALD as your charity of choice!
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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! Together we can Knock Out ALD!