In our new Advocacy in Action series, we’re sharing stories that highlight how Notre Dame’s patient advocacy training extends beyond the classroom. In this piece, 2025 graduate Alexander Brandt reflects on a powerful moment from his time in the Minor in Science and Patient Advocacy: hearing young rare disease advocate Jordan McLinn's story - and meeting Jordan’s mother, Laura. By launching and leading a new Patient-Led Grand Rounds series during the academic year, Alex gained a deeper understanding of what it means to advocate with (not just for ) patients. His experience offers a moving reminder of how listening to patient voices can shape the way future healthcare professionals learn, lead, and care.
Advocacy in Action: What Jordan Taught Me
"When asked what he wants to be when he grows up, Jordan McLinn responds without hesitation: a firefighter, so that “I can save people’s lives, and they can live a happy life with their family.” Every time I hear this, I am struck by the weight of his words. Diagnosed at age three with Duchenne muscular dystrophy (DMD), Jordan envisions a life helping others despite the challenges he faces daily. He and his family have spent years waiting for FDA-approved treatments, advocating at state and national levels for access to experimental drugs, and traveling regularly for care. It is difficult to hear about the daily realities of living with a rare disease, and I am reminded of how fortunate I am to have grown up healthy. Jordan’s happiness is not a given—it is the result of relentless effort by him and his family.
I had the opportunity to interview Jordan’s mother, Laura McLinn, during the first patient-led grand rounds at the University of Notre Dame. Laura is a dedicated advocate: she founded a support organization for DMD families, played a key role in passing the Right to Try Act, and assists rare disease families with navigating Medicaid waivers and other resources. The grand rounds, structured as a patient-led, student-moderated experience, introduced my peers and me to Jordan’s story. During the session, I remember looking around the room and noticing how my peers leaned in as Laura spoke. The usual clinical detachment seen in case discussions was replaced with personal engagement. It was a moment when I realized that medical education is incomplete without these patient narratives. Listening to Laura deepened everyone’s understanding of the lived experiences of rare disease patients.
Over the past year, I have also interviewed patients and caregivers affected by Leber hereditary optic neuropathy, sickle cell disease, and Hirschsprung’s disease. One lesson has been clear: the McLinns’ experience of struggle and advocacy is not unique. In addition, I have learned that a patient’s pain should never be underestimated and that stereotypes can create barriers to care. I have seen how patient communities serve as vital support networks. I have realized that the word “cure” often fails to capture the realities of treatment—the burden, side effects, and ongoing uncertainty. Rare disease patients and families face far more than frequent medical visits; their stories remind us how much remains unseen.
Beyond personal awareness, this experience has changed how I view medical education itself. If future providers are to truly serve their patients, patient-led discussions should not be a rare event but a fundamental part of our training. When patients share their stories, they challenge us to move beyond textbook definitions and clinical protocols.
Jordan’s story, like those of the other patients I have met, continues to shape my path. Like Jordan, I want to help save lives, and with each patient-led grand round, my commitment grows. I now see medicine not only as a profession but as a partnership—one where the voices of patients are just as vital as the expertise of physicians. I carry with me an increased awareness of the struggles faced by those with rare diseases—an awareness that will remain with me as I innovate and care for patients in the future. Medicine is not just about treatments; it is about listening, learning, and standing alongside patients in their fight for a better life." - Alex Brandt, Class of 2025
Advocacy in Action is a guest-authored reflection series from the Patient Advocacy Initiative that highlights how students are putting advocacy into practice beyond the classroom. Whether leading volunteer teams, building partnerships, or creating new resources, these stories showcase the impact students and alumni are making, and the lessons they’re learning along the way.