A patient, their family, medical staff, and FRIENDS of Patients at the NIH team up to create a new initiative to encourage patients in recovery to walk for exercise that can lead to better outcomes.
Meet Patient Hero: Shannon
—25 Years, One Diagnosis, and a Lifetime of Resilience
For 25 years, Shannon searched for an answer to why she was suffering debilitating symptoms—symptoms that puzzled medical teams even at the country’s top-tier institutions. “A 25-year-long journey with rare, complicated issues isn’t easily diagnosed, even when you’ve got the best people at the best medical centers working hard to do so,” Shannon explains.
Shannon’s search for answers eventually brought her to the NIH’s Undiagnosed Diseases Network, then to the NIAID for immune management, and finally to the NIH’s bone marrow transplant team. The clinical trial she joined marked a pivotal turning point—one aimed at treating the root cause of her condition rather than merely managing symptoms. “That’s why the NIH matters so much,” she says. “They have the dedicated resources to address what the outside medical world can’t.”
Turning Recovery into Community
Post-transplant recovery is often defined by small, unglamorous wins—such as finding the strength to walk laps in a hospital hallway on the days when it feels nearly impossible. Throughout her recovery, Shannon’s husband, Matt, and her sisters kept her moving, one lap at a time. “They kept me motivated to walk, even when it was hard,” Shannon recalls.
Inspired by this, Shannon and Matt collaborated with their care team to create NIH CRC’s “Marrow-thon Champion,” a walking program designed to provide that same encouragement to other patients. By creating goals and celebrating milestones, the program ensures no patient has to face the difficult recovery process alone. “It really matters for recovery,” she notes.
A Deeper Mission
Shannon and Matt’s experience highlighted a larger fact: the NIH is an essential engine that leads to medical breakthroughs—from cancer therapies and mRNA vaccines to gene editing. The NIH is uniquely situated to pursue the slow, foundational research that private industry often avoids.
“Public science is the floor beneath all medicine,” Shannon says. Their belief in this mission has led them to become advocates for NIH funding and to provide the seed funding for the Marrow-thon program.
Join the Movement
Shannon and Matt have turned their personal journey into a commitment to help others. We invite you to join them in supporting the patients who rely on the NIH’s groundbreaking work. Whether through advocacy or contribution, your support ensures that the next patient has the resources they need to keep moving forward.
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What is a “Marrow-thon Champion”?
The Program: A walking initiative for patients in the NIH Clinical Research Center’s Blood and Marrow Transplant Unit (3rd floor, NE) undergoing transplants or cell therapy.
The Purpose: Encourages patients to incorporate regular exercise into their routines to build strength, maintain endurance, and support recovery.
How It Works: Uses encouragement, personalized goals, and milestone celebrations—such as t-shirts and custom door signs—to keep patients motivated.
The Science: Rooted in evidence showing that patients heal better when they participate in regular movement.
Motto: “Recovery is a marathon, not a sprint. Every lap is a victory, every step is progress.”
