In our latest Advocacy in Action reflection, William Crumlett (ND '27) looks back on his summer with the FamilieSCN2A Foundation and how the experience reshaped his understanding of what advocacy can look like. From helping organize a scientific poster session to listening to caregivers share what outcomes matter most in their daily lives, William saw the importance of creating opportunities for patients and families to be part of the conversation. And sometimes, he learned, advocacy can be as simple (and joyful!) as making sure everyone has a place in the line. Through these experiences, William came to see advocacy not just as spreading a message, but as looping people in and making space for their voices to help shape research, care, and community.
Advocacy in Action: Looping People In
"When I began my summer with the FamilieSCN2A Foundation, I knew almost nothing about SCN2A. I remember sitting down at my computer and Googling the acronym just to figure out what it meant. At first, even saying the name of the foundation was a tongue twister and a little intimidating. I was entering a community built around a rare genetic disorder I had never encountered before, and I was not quite sure what my role in it would look like.
From the first day, however, the FamilieSCN2A team was incredibly welcoming. I quickly began learning not only about SCN2A-related disorders, but also about the families, researchers, physicians, and advocates working together around them. Before this summer, I generally thought of advocacy as spreading a message: raising awareness, explaining an issue, or encouraging others to take action. Through my work with FamilieSCN2A, I began to understand advocacy somewhat differently. Sometimes advocacy is not about speaking louder. Sometimes it is about making sure more people have an opportunity to join the conversation.
My largest project of the summer was organizing the scientific poster session for the 2026 Families & Professionals Conference. I coordinated submissions, communicated with presenters, helped develop the judging rubric, recruited judges, created conference materials, and eventually managed the logistics of the session itself. At first, I viewed the poster session mostly as a scientific event. Researchers would present their work, judges would evaluate it, and awards would recognize particularly strong research and scientific prowess.
One part of the session, however, started to emerge as especially meaningful to me: the People’s Choice Award. Unlike the scientific awards, this category was decided entirely by families attending the conference. We created it to recognize that research should not only be scientifically strong, but should also connect with the people it is ultimately intended to serve. Families were given some basic guidance for evaluating posters and sample questions they could ask, but the decision was completely theirs.
Watching them vote changed the way I thought about the relationship between families and research. Parents moved from poster to poster, asking researchers detailed and thoughtful questions about their work. They wanted to understand what was being studied, why it mattered, and how it might eventually affect their children. Earlier in the summer, I sometimes wondered how many families would really engage with the research summaries, scientific materials, or other resources I was helping create. At the conference, I realized that the issue was never a lack of interest. Families wanted to engage with the science when they were given a meaningful opportunity to finally do so.
That same lesson became even clearer through my work on the SNORKLE study, or SCN2A Narratives, Outcomes, Research, Knowledge, and Lived Experience. I served as one of the main coders for responses collected through the foundation’s caregiver Facebook community, took notes during in-person caregiver interviews at the conference, and helped develop a poster presenting the project.
Before working on SNORKLE, my understanding of SCN2A was heavily centered on seizures. They are one of the most visible and serious parts of many SCN2A-related disorders, so it was easy for me to assume that seizure control would naturally be the primary measure of whether a treatment was working. Listening to caregivers showed me how incomplete that picture can be.
Families described challenges involving sleep, eating, motor function, communication, behavior, independence, and many other aspects of everyday life. For many families, seizures were only the beginning of a much larger cascade of challenges. Those conversations taught me that what is easiest to measure scientifically is not always what matters most to patients and caregivers.
If research and drug development are ultimately intended to improve people’s lives, then patients and families need opportunities to help define what “improvement” actually means. SNORKLE gives families a way to do exactly that by documenting lived experiences and identifying outcomes that may otherwise receive less attention. The hope is that those perspectives can eventually inform broader advocacy efforts, including the foundation’s externally-led Patient-Focused Drug Development work and a future Voice of the Patient Report.
By the end of the conference, I thought I had a pretty good idea of what my biggest accomplishments from the summer had been. I had watched the poster session I spent weeks organizing come together, contributed to a research project centered on caregiver experiences, and even had the opportunity to give the poster awards speech during the remembrance dinner.
Then came the Warrior Dance Party.
The dance party is one of the culminating events of the Families & Professionals Conference. Alongside the remembrance dinner honoring SCN2A warriors, it gives conference attendees the opportunity to celebrate together after several days of serious conversations about research, treatment, and life with SCN2A.
At some point during the party, I started a conga line.
I did not think much of it at first. It was simply something fun to do. But the line kept growing. When I eventually looked back, more than one hundred people seemed to be moving through the room together. Children, siblings, parents, researchers, volunteers, and SCN2A warriors were all part of it. Some danced on their feet while others joined from their wheelchairs, but everyone had a place in line.
Afterward, families kept coming up to thank me for starting it and for finding a way to get so many people involved. I had spent weeks preparing the poster session and had just given an awards speech, yet one of the moments people mentioned most was something that required almost no preparation at all.
It may seem like a small moment compared with the research and advocacy projects I worked on throughout the summer, but in retrospect, the conga line captured much of what I had been learning.
Advocacy can mean spreading an important message, but it can also mean looping people in.
It can mean giving families a vote in a scientific poster session. It can mean asking caregivers which treatment outcomes actually matter in their daily lives. It can mean creating opportunities for researchers and families to speak directly with one another. And sometimes, quite literally, it can mean making sure everyone has a place in line.
I began the summer not knowing what SCN2A was. By the end, I could not quite see a way to simply leave the community, so I didn’t. I have continued volunteering with FamilieSCN2A and hope to remain involved for as long as I am able. What started as a summer internship became a community of families, advocates, researchers, and professionals who welcomed me into their work and trusted me to contribute to it.
As I continue toward a career in medicine, I do not yet know what specialty I will ultimately pursue or exactly what role rare disease will play in my career. I do know that I want to carry this lesson with me. Patients should not simply receive the products of medicine and research; their experiences should help shape them. Whether I am working in rare disease or another area of medicine, I hope to practice in a way that creates space for patients to define what matters to them and ensures that their voices remain part of the conversation.
I am incredibly grateful to the FamilieSCN2A Foundation, especially Leah Schust Myers and my supervisor, Melody Kisor, for welcoming me into the community and giving me opportunities to take ownership of meaningful projects. I am also grateful to Katrina Conrad and Professor Barbara Calhoun of Notre Dame’s Patient Advocacy Initiative for making this experience possible and for continuing to challenge students to think differently about what advocacy can look like. Most importantly, I am grateful to the SCN2A families who shared their stories, their questions, their celebrations, and their community with me.
I entered the summer thinking advocacy meant spreading a message. I left understanding that sometimes the most meaningful thing an advocate can do is make sure everyone has a chance to be included." -William Crumlett (Class of 2027)
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.
Originally published by at patientadvocacy.nd.edu on September 11, 2026.