Macie's Mission is a 501(c)(3) nonprofit organization committed to raising awareness, supporting families, and funding research for Pompe disease and other rare genetic diseases. Our mission is to inspire hope, promote education, and help advance research toward better treatments and ultimately a cure.
Pompe disease is a rare, progressive genetic disorder that causes muscle weakness, making movement and breathing increasingly difficult over time. It occurs when the body lacks sufficient amounts of an enzyme called acid alpha-glucosidase (GAA), which is responsible for breaking down stored sugar (glycogen). Without enough of this enzyme, glycogen accumulates in muscle cells, causing damage and progressive weakness. Because symptoms vary from person to person, Pompe disease can go undiagnosed for years, making early detection and treatment especially important. Macie's Mission proudly supports Dr. Priya Kishnani and her groundbreaking Pompe disease research at Duke Children's Hospital, helping advance early detection, improve treatments, and bring hope to families affected by this rare disease.
Through the Macie's Mission Run Club, we're bringing together runners, families, friends, and supporters who believe in making a difference for the rare disease community. We're lacing up our sneakers and hitting the pavement for something far greater than a finish line! Every mile we run, every dollar we raise, and every person we reach helps shine a light on rare genetic diseases and brings us one step closer to a stronger tomorrow.
Whether you're running alongside us, cheering from the sidelines, or supporting our fundraising efforts, YOU are part of our mission! Together, we can turn miles into awareness, footsteps into hope, and fundraising into meaningful change. Join us as we run for hope, run for awareness, and run for a cure!
