Amanda Almany | Parent Advisor
NKH Crusaders

Amanda Almany is the founder of the Nora Jane Foundation, a nonprofit organization dedicated to advancing research and support for Nonketotic Hyperglycinemia (NKH), a rare and often neglected metabolic disorder. Inspired by her daughter Nora’s diagnosis, Amanda launched the foundation to close critical gaps in research, raise awareness, and provide meaningful resources for families affected by NKH. In addition to her work with the foundation, Amanda serves as a board member of NKH Crusaders, where she leads patient advocacy efforts and supports vital fundraising initiatives. She first connected with Kristin Archibald, founder and president of NKH Crusaders, in 2016, shortly after Nora’s birth. Inspired by Kristin’s passion and dedication to helping NKH families, Amanda quickly got involved and has been an integral part of the organization ever since. Beyond her advocacy work, Amanda is a full-time 5th grade math and science teacher in Rolla, Missouri. She sponsors both a service club and a robotics club, and also teaches an adaptive dance class for students of all abilities. Passionate about advocacy, education, and community-building, Amanda continues to be a tireless voice for families navigating rare disease diagnoses. She lives in Saint James, Missouri with her fiancé Steve, their four children—Caden, Kylie, Alex, and Nora—and their three dogs.