Living with a rare disease means that Amanda is one of 30 million-plus “zebras” in the United States – and while she may be rare, she’s not alone.
Amanda is a community partner in the National Organization for Rare Disorders (NORD®) Running for Rare charity program, where individuals impacted by rare disease join together with runners to raise awareness while fundraising. Donations support NORD’s mission to improve the health and well-being of people with rare diseases by driving advances in care, research, and policy.
“It is reinvigorating to meet people who want to be a part of Running for Rare and are interested in making meaningful connections,” Amanda shares. “It is possible to find your herd.”
Amanda’s herd includes runners like Kyra, who was paired with Amanda during the 2024 Boston Marathon.
“Amanda continues to be the most amazing community partner and of course, my ultimate running inspiration! Her guidance and friendship truly got me through my first marathon,” Kyra shares.
Boston was Kyra’s first marathon, and she appreciated the chance to put meaning behind her miles.
“Through Running for Rare, I wanted to bring awareness to just how incredible the rare community is and how important a role NORD has in advancing care and education,” Kyra says. “My race was not only a personal goal, but also in honor of the inspiring strength and fierceness of rare patients and families.”
Bonds like Amanda’s and Kyra’s are regularly formed through Running for Rare, and they continue long past race day.
“Kyra’s energy is contagious, and since she has finished her marathon, we have continued to stay connected and cheer each other on from afar,” Amanda says.
In honor of Global Running Day, we invite you to learn more about Running for Rare and hope you’ll consider getting involved as a community partner or runner today!
