What happens when lived experience becomes more than a story? It becomes expertise that helps shape research, care, programs, and policy in eye health. When patients and communities are meaningfully engaged and are given the training, resources, and support needed to participate as true partners, their experiences can create systems change. Purposeful investments in patient engagement and storytelling lead to opportunities for improvement.
Virtual Event
Investing in Lived Experience – Building Partnerships That Create Systems Change
October 20 @ 1:30 PM - 3:00 PM
Virtual Event
- CDT
For the third webinar of the 2026 Prevent Blindness Focus on Eye Health Webinar Series, join a funder, researcher, and individual living with a vision loss for a conversation about how well-resourced and thoughtfully planned patient and community partnership can turn lived experience into action and impact. Together, they will explore how patient expertise can strengthen research, inform decision-making, drive advocacy, and create lasting systems change—and how funders and community-based organizations can help create the space for human-centered engagement.
Moderator
Julie Grutzmacher, MSW, MPH, Senior Director, Patient Advocacy and Population Health, Prevent Blindness
Panelists
Stephanae McCoy, Founder and Conversation Steward, Bold Blind Beauty
Susan Olivo, Executive Director and CEO, Lavelle Fund for the Blind
Maya Sabatello, LLB, PhD, Associate Professor of Medical Sciences, Department of Medicine and Department of Medical Humanities and Ethics, Columbia University
Moderator and Presenter Bios
Julie Grutzmacher, MSW, MPH
Senior Director of Patient Advocacy and Population Health Initiatives
Prevent Blindness
Service, purpose, and relationships are the throughlines for Julie Grutzmacher’s career. She holds a dual master’s degree in social work and public health and has more than twenty years of experience advocating for equitable access to and delivery of healthcare services. Her work has led her to co-designing a primary care and leadership track for medical residents in an academic medical facility, providing care coordination and health education with pregnant women at increased risk for pre-term birth in federally qualified health centers, conducting psychosocial assessments and grief counseling with families in the neonatal intensive care unit, and advocating for populations impacted by HIV/AIDS both as a Peace Corps volunteer in the kingdom of Eswatini and in a large teaching hospital in Chicago. Today, she serves as the Senior Director of Patient Advocacy and Population Health Initiatives at Prevent Blindness, where she was instrumental in establishing the ASPECT patient engagement program which trains the visually impaired and blind community and their allies to be storytellers and advocates for change. She believes in the triumph of the human spirit and the undeniable power of relationships and resources to get you through hard times. She enjoys being a connector for people, a bridge to fulfillment. She is dedicated to creating a space where diverse perspectives can be heard and individuals are empowered to discover and use their voices for advocacy.
Stephanae McCoy
Founder and Conversation Steward
Bold Blind Beauty
Stephanae McCoy is the Founder and Conversation Steward of Bold Blind Beauty, a media and advocacy platform centered on A.I.R. (Access, Inclusion, & Representation)™. Ms. McCoy is legally blind, and her own journey with blindness revealed biases she didn’t know she carried. After a career that included Deloitte, she became a full-time advocate, bringing skills as an editor, speaker, podcaster, and multimedia producer to stories that are too often overlooked. Ms. McCoy considers herself an introvert who believes in the inherent value of every person. Her role isn’t to be the loudest voice in the room. It’s to create space for meaningful voices to be heard.
Susan Olivo
Executive Director and CEO
Lavelle Fund for the Blind
Susan Olivo is the Executive Director and CEO of the Lavelle Fund for the Blind, which supports programs that help individuals who are blind or visually impaired live full, independent and productive lives. An experienced foundation executive leading the Fund’s national and international grantmaking programs, she has a deep understanding of both the art and science of grantmaking and its ability to effect systemic change. She is passionate about disability inclusion, accessibility, and inclusive and collaborative grantmaking. Susan holds an MBA in Finance and Marketing from the University of Chicago.
Maya Sabatello, LLB, PhD
Associate Professor of Medical Sciences
Department of Medicine and Department of Medical Humanities and Ethics
Columbia University
Dr. Maya Sabatello is a tenured Associate Professor of Medical Sciences at the Center for Precision Medicine and Genomics, Department of Medicine, and the Division of Ethics, Department of Medical Humanities and Ethics, at Columbia University. A former litigator with transdisciplinary background, she explores the ethical, social and policy issues relating to biomedical technologies, genomic information and Big Data and the impacts thereof on social structures, communities, individual rights, and health outcomes. Dr. Sabatello’s NIH-funded mixed-methods and community-based participatory research program focuses on the ramifications of genetic data in clinical and non-clinical settings (e.g., schools); the psychosocial impact of genomic data on adolescents and families; challenges in translational genomic research; and issues of trust, consent, data sharing and overall participation of people with disabilities in genomic and precision medicine research. Dr. Sabatello served as Co-chair of NHGRI’s Community Engagement in Genomics Working Group (CEGWG) in 2021-2025; she currently serves as a member of the ASHG’s Professional Practice & Social Implications Committee and the Institutional Review Board (IRB) of NIH’s All of Us Research Program.
