In the latest Advocacy in Action feature, Class of 2026 student Tim Theisen reflects on his journey into advocacy: one that began with a personal connection, and has since evolved into purposeful leadership inside and outside the classroom. Through his work with the LHON Collective, Tim has led a small group of students to develop state-specific resources for individuals experiencing vision loss, and has continued his work with the LHON community as a Summer Immersion inter. As both a Peer Leader and an intern, he has discovered the power of working with patient communities to create meaningful change. Tim will graduate in December 2025 and continue his time with the Patient Advocacy team by serving as a Post-Baccalaureate Fellow in spring 2026. His story depicts what it means to lead with compassion, intention, and impact.
Advocacy in Action: Leading with Purpose
"At the beginning of my time at Notre Dame, a close family friend of mine was diagnosed with lupus, a rare autoimmune disease. As my mom became part of her care team, I recognized the difficulty in navigating a rare disease, first in searching for an accurate diagnosis and then in finding specific resources to address the illness. I joined the Patient Advocacy minor to learn more about how to be the best health care advocate for my family friend, but I didn’t truly grasp the meaning of this until the 2023 Notre Dame Patient Advocacy Summit. At this event, Shannon Boxx, a Notre Dame alumna and Olympic gold medalist, shared her story of navigating a professional soccer career while battling unexpected lupus flare-ups. After the event, I spoke with Shannon and learned more about the valuable resources provided by patient service organizations, which I then shared with my family friend. Along with Shannon, I heard from students who were actively working to develop the capacity of similar organizations, and I was inspired by the noticeable change they were able to enact through academic and extracurricular work. Seeing the power of the resources and connections provided by patient service organizations first-hand from my family friend, I approached Program Manager Katrina Conrad and Professor Barb Calhoun about opportunities to help those struggling with a new diagnosis. After developing skills in advocacy through minor coursework and extracurricular projects, I became a Peer Leader for the 2024-2025 academic year to continue this goal, ultimately partnering with the LHON Collective.
The LHON Collective is a nonprofit organization dedicated to accelerating research aimed at curing Leber’s Hereditary Optic Neuropathy (LHON), while simultaneously improving the lives of those affected by it. LHON is a rare mitochondrial disease that causes progressive vision loss. At any age or stage of life, one with an LHON mutation can rapidly lose their vision, leading to significant personal, professional, and financial repercussions. As a Peer Leader, I led a team of twelve students in the LHON State Guide Project. To address the challenges faced by those affected by this rare disease, we created state-specific resource guides to help navigate new diagnoses and subsequent vision loss. All resources collected were either low- or no-cost, and we worked with regional groups in the LHON community to ensure that they are valuable for their respective states. In the past two semesters, we developed nine comprehensive, 20-30 page guides, a Spanish version of the general U.S. guide, and English and Spanish audio recordings of the general U.S. guides to improve accessibility. It was incredible to learn about all of the resources available and to pursue greater equity in the rare disease space by making them readily available for free on the LHON Collective website.
As a Summer Immersion Grant recipient, I have broadened my understanding of LHON and the importance of state resource guides through an internship at the LHON Collective. So far, I have primarily helped with preparing materials and content for their recent international conference in St. Louis, Missouri. For this, I assisted with attendee management, audio/visual coordination, session planning, and on-site guidance. I saw that much more goes into planning a conference than meets the eye! Activities like creating a master slide deck tailored to a visually impaired audience and drafting directions for navigating the new environment emphasized the importance of prioritizing inclusive practices to ensure that all people’s thoughts can be brought to the table. While attending the conference, I met with a diverse group of people who were brought together by their own or a loved one’s LHON diagnosis. It was powerful to see the impact of community in providing strength to those with this significant disability. From hearing patients’ stories, I learned the true impact of losing one’s vision, and I saw first-hand the importance of providing resources for navigating education programs, employment, or transportation. I was able to share resources created by the LHON State Guide Project Team with many attendees, and I couldn’t help but think back to my experiences collecting resources with my family friend and the power that brought her.
Along with preparing for the conference, I have collaborated with Dr. Amie Koch from Duke University on drafting qualitative research papers based on LHON patient testimonies to share the LHON experience more broadly. Notably, we hope that these papers will provide neuro-ophthalmologists and other medical professionals with a more thorough understanding of what patients find most important in being diagnosed with LHON. Again, these stories have reinforced the importance of the work done by the LHON Collective in connecting community members for medical, social, and emotional support and providing resources for all patients to achieve their optimal health. It has been insightful to work on a research publication, learning conventions for academic writing and coupling my love for this community with professional development.
I am excited to bring the lessons I have learned from the LHON conference and my research with Dr. Koch back to Notre Dame, providing the team with a deeper understanding of the value of our work. As head Peer Leader next fall and a Patient Advocacy Initiative Post-Baccalaureate Fellow next spring, I am excited to build upon my work with LHON by continuing the LHON State Guide Project and exploring ideas for expanding the model to other communities. I am incredibly grateful for the opportunity to learn from this wonderful community and build upon my understanding of approaching health care from a patient-focused perspective. As I apply to medical school and aspire to be a physician, I will hold my time with the LHON community close to my heart, inspiring my care to holistically cover my future patients’ well-being. I will remember the importance of bringing the patient voice to the center of medical care and the importance of patient service organizations in pushing this forward. I look forward to exploring rare disease advocacy deeper in my future educational and professional life, knowing the importance it has in building equity across health care systems." - Tim Theisen, Class of 2026
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.