Megan Crowley ('19) knows firsthand that rare disease is not just a diagnosis — it's a lens through which you see the world. Diagnosed with a rare genetic disease at just 15 months old, Megan has grown into a passionate advocate, a nonprofit leader, and a firm believer in the power of sharing her lived experience. A graduate of the University of Notre Dame and the University of North Carolina at Chapel Hill, Megan now serves as Assistant Director of Mission Integration at the Make-A-Wish Foundation of New Jersey. She’s also a proud dog mom to Lizzie, a Disney enthusiast, and a fierce voice for the rare disease community.
In this Shared Ground reflection, Megan writes about partnering with students in the Minor in Science and Patient Advocacy — and the quiet, meaningful shifts that happen when students show up ready to listen and learn. Thank you, Megan, for your continued mentorship and support of this program!
Shared Ground: Rooting Learning in Lived Experience
"Having now partnered with two different groups of students from the minor, Marin and Calvin in Spring 2024 and Tim and Michael in Spring 2025, I have found the experience to be consistently meaningful. I have worked with many different people and audiences over the years, but there is something uniquely energizing about helping students connect the dots between what they are learning in class and what that looks like in real life, especially when it comes to rare disease. I appreciated that both groups came into the experience ready to learn, willing to be challenged, and open to perspectives that might be far outside their everyday world.
There were moments with both groups that stuck with me. Marin and Calvin had a natural empathy and focus that made it easy to talk openly with them right away. We did not just stay in the academic lane. They asked thoughtful questions about daily life, what independence means for someone like me, and how systems help or fail. Tim and Michael were more reserved at first, but over time they became increasingly curious and reflective. I could see their perspective shift as they dug deeper. It was not dramatic, but it was real. That is what I value most, when a conversation plants a seed that changes the way someone thinks going forward.
While this was not the most personally transformative work I have done, it was definitely rewarding. I love working with students. I see so much potential in them, and I enjoy being part of the process where someone begins to understand how much more there is to consider in the world. Disability, healthcare, access, and equity all intersect in ways we often overlook. For me, rare disease is not just something I live with; it is a lens that shapes how I see systems, relationships, and opportunities. Sharing that lens with students feels like a small but important contribution to their growth.
What I hope they took away from our time together is that rare disease is not rare to the people living with it. It is not just a topic or a story. It is daily life full of nuance, challenge, and purpose. I hope they left with more than a project completed. I hope they gained a sense of responsibility, an awareness that they have a role to play in making the world more accessible, thoughtful, and just. Even if they do not go into healthcare or policy, they can still carry that awareness into whatever space they lead in.
ND has always been a place that asks big questions and pushes its students to connect faith, intellect, and service. Getting to partner with students through this minor has reminded me of that. It is a privilege to be part of their learning process and to add my perspective to their formation. It is also a reminder to me that my voice and the voices of others living with rare disease belong in every room, not just the ones that are already talking about disability." - Megan Crowley
Shared Ground is a guest-authored series featuring stories from the patients, caregivers, advocates, and community partners who collaborate with students in the Minor in Science and Patient Advocacy. These firsthand reflections explore what it means to learn together, and why lived experience belongs at the center of advocacy education.
Originally published by at patientadvocacy.nd.edu on July 11, 2025.