In a powerful discussion at the recent 2025 Focus on Eye Health Summit, three graduates of the Prevent Blindness ASPECT Patient Engagement Program—Dr. Leslie Nwankwo, Linda MacLeod, and Dr. Abubakar Sadik Mohammed—shared how personal stories can drive advocacy across healthcare, government, and community sectors. Their talk underscored the transformative potential of storytelling, emphasizing that patient experiences are vital in shaping policies, funding priorities, and accessible innovations in eye care. Below are highlights from that conversation.

Personal Journeys Spark Advocacy

Each panelist’s journey into advocacy emerged from personal or professional experiences with vision loss. Dr. Leslie Nwankwo, a Doctor of Nursing Practice living with retinitis pigmentosa (RP), described how her dual perspective as a nurse and patient shaped her advocacy. “My goal is to ensure that the patient’s voice is central to any innovation in eye care,” she emphasized, recalling how she spoke at FDA meetings to bring real-world urgency to gene therapy approval processes.

Linda MacLeod, a retired attorney with Usher syndrome, transitioned from civil litigation to disability advocacy after facing discriminatory rideshare denials due to her guide dog. “Everything…is a process,” she reflected, describing how she won a $12,000 case against Uber and began lobbying for accessible medical devices and websites through national advocacy organizations. Her story illustrates how personal challenges can catalyze widespread impact.

From the Clinic to Capitol Hill

Dr. Sadik Mohammed, an optometrist and vision science researcher, traced his advocacy roots to underserved communities in Ghana. Now based at the University of Alabama at Birmingham, he connects neuroscience research to advocacy, campaigning for sustained federal funding of the National Eye Institute. “No school-going child should be deprived of education just because of an uncorrected refractive error,” he insisted, urging clinicians to step beyond diagnostics and engage with patients as individuals.

All three panelists have spoken directly with lawmakers or regulatory agencies, often through organized visits or workshops. Linda shared how she leveraged a neighbor’s story about insulin pump inaccessibility to reinforce her advocacy, while Sadik stressed grassroots methods: “Advocacy doesn’t start at Capitol Hill… it starts with using everyday spaces to initiate conversations.”

Strategies, Support, and the Power of Community

Panelists agreed that advocacy begins with sharing one’s own story, however small. “Start by taking a deep look within,” Leslie advised. “You already have what you need… and that is your story.” She and Linda both emphasized the ASPECT Program’s value in honing communication skills and building confidence. “I’ve been telling stories for decades,” Linda noted, “but learning to tell my own in five minutes was a powerful experience.”

They also offered practical advice: from building a contact Rolodex of government and corporate accessibility channels to leveraging community events like farmers’ markets for outreach. Sadik added, “We scientists must demystify our work… and involve communities so they can rally behind our cause.”

The panel closed with heartfelt encouragement to future advocates: use the tools and communities available, stay persistent, and never underestimate the impact of one authentic voice. As Sadik put it, “There’s no perfect time to start. Your story is unique—and your voice matters.”

*Prevent Blindness. (2025, May 16). 2025 Focus on Eye Health Summit Session: Putting Advocacy into Action [Video file]. https://www.youtube.com/watch?v=hzhap1Thztw 

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