How One Michigan Family Built Connections And Inspired Global Support For Retinal Research

Team Aria at the 2025 Hope for Vision Fundraising Walk

Lisa LoVasco’s daughter Aria was just three months old when she was diagnosed with Familial Exudative Vitreoretinopathy (FEVR), a rare retinal disease that can lead to vision loss. The diagnosis immediately sparked Lisa’s desire to find and support that could help her daughter, and other families navigating similar uncertainty. 

“You feel out of control, as a parent,” Lisa said. “There is so little you feel like you can do to help.” 

Showing up for doctors appointments didn’t feel like enough, leading Lisa to search out the Pediatric Retinal Research Foundation (PRRF), an organization supported by and led in part by some of Aria’s doctors.

“It’s a phenomenal group of doctors who all care very much and are really world-renowned,” Lisa shared. “The PRRF community consists of very special people who care very much about the work they’re doing.” Through the PRRF, Lisa became involved in fundraising for new treatments, research initiatives, and community connection programs for families affected by pediatric retinal diseases.

For Aria, connection mattered just as much as research. “She used to ask me, ‘Can you make me a playdate with another kid who has eyes like me?” Lisa recalled. After trying to connect with online groups, The LoVasco family finally met another family through PRRF. At the Foundation’s annual Family Connection Conference, they met their Mia, another young girl living with FEVR. 

Upon meeting Mia, Aria said, “I feel like a dream is coming true,” shared Lisa. The two became instant friends and despite living across the country, the families stayed connected, attending PRRF events such as the Hope for Vision Walk, which has become a cherished tradition for both families. 

Friends Mia and Aria pose, making a heart shape with their hands pressed together, with Dr. Capone at the 2025 Hope for Vision Walk.

For Lisa, gathering a large group each year for the Walk was important to show Aria she’s supported. “I wanted Aria to feel loved and supported through all of this. She gets asked a lot about her eyes, but I never want it to be something she’s ashamed of.”

For Aria, the Walk felt like a party. The family wore beads, they ate good food, invited friends, and even spray painted their hair blue. “It’s where we celebrate the kids with eye disease,” Aria said. Her favorite part? Feeling supported and loved. 

“The Hope for Vision Walk embodies everything our Foundation stands for—community, hope, and action,” said PRRF President Antonio Capone, Jr., M.D.. “Families impacted by pediatric retinal diseases walk alongside researchers, medical professionals, and community supporters who are all united by a shared mission – to change the future.  Every participant helps us advance critical research while building the supportive community that these families desperately need.”

The 2025 Hope for Vision Campaign raised $52,375, with supporters and families participating both in person and virtually. The momentum carried into PRRF’s Year-End Fundraiser for Rare Disease Research, offering supporters a meaningful way to close out the year—and begin a new one—by investing in hope, progress, and care for children with rare retinal conditions.

PRRF Board Member Chuck Walls, whose son Collin lives with X-Linked Retinoschisis, reflected on the impact of the campaign. “We were incredibly excited to participate in the 2025 Hope for Vision Campaign, which truly became a global event,” Walls said. “Friends and extended family walked, ran, and biked in support—from Virginia and North Carolina to communities across the country and around the world, including Europe and the Far East. The Hope for Vision Campaign brought us together wherever we were, all for such an important cause.”

For Lisa, involvement with PRRF offered something invaluable during an otherwise overwhelming journey. “You are not alone in this,” she shared with parents newly supporting a child with a rare retinal disease. “It’s a big figuring out process, a shock to the system. But, there is hope.” 

“Being involved with PRRF has truly been part of the healing process for me. With so many things out of your hands, here is something tangible to help in some way: support research, make connections, get information out to other people, and help my daughter.”

This year, the 2026 Hope For Vision Walk will take place on Sunday, April 19, 2026, the same weekend as the PRRF Family Connection Conference. The events are open to both in-person and virtual participation around the world. Learn more and register here: https://prrf.org/upcoming-events/united-in-hope/.