Through Our Eyes

Kai Owens was known as No Fear Kai. Around age eight, he suddenly didn't want to leave his mom's side. For two years, doctors told his mom, Kim, it was anxiety. A jumbled Christmas list finally showed her something physical was happening with his sight. In this episode, Kim shares what she'd tell other parents: trust your gut, push for the right tests, and don't let the medical search take over your child's childhood. She talks about fighting for braille and access in school, teaching Kai to speak up in his own IEP meetings, and how an online community turned into something much bigger. Kai went on to become his high school's valedictorian, and today he's a grad student and jazz drummer. To learn more about Kim's work, visit navigatingblindness.com or find Navigating Blindness on Instagram and Facebook. Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: linktr.ee/throughoureyespodcast

Cazerny Bussey lost his eyesight at 15. He was a sophomore at the Frank Sinatra School of the Arts in New York City, already performing, already building something. Losing his sight could have stopped all of it, but it didn't. In this episode, Cazerny — Brooklyn-born recording artist, author, speaker, father of five, and Founder and CEO of Even Though I'm Blind, Inc. — shares how losing his sight became the beginning of a bigger vision. He talks about graduating with his class when no one knew how to accommodate a blind student, growing up with a blind father who was his superhero, and building a media organization dedicated to changing how the world sees blind and visually impaired people. Learn more by visiting eventhoughimblind.com and find them on TikTok, Instagram, and all major podcast platforms. Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: linktr.ee/throughoureyespodcast

Sam didn't expect to leave her daughter's eye appointment with a diagnosis of her own. But three days after bringing her premature daughter home from the NICU (where ROP had already become part of their story), she mentioned some symptoms to the ophthalmologist and was seen an hour later with a detached retina. In this episode, Sam — a special education teacher, mom of three, and the creator behind @MrsChaos212 on social media — shares the honest, funny, and sometimes overwhelming reality of navigating vision challenges as both a parent and a patient.  Her message to every parent: when we really listen to our kids, we can advocate for them in life-changing ways. You can find Sam on TikTok, Instagram, Facebook and YouTube at @MrsChaos212.  Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: linktr.ee/throughoureyespodcast

What does it look like to do the research that could one day change outcomes for children with retinal disease? Dr. Michael Risner and Dr. Luis Villa-Diaz can tell you firsthand. Both assistant professors and researchers at the Oakland University Eye Research Center, Dr. Risner and Dr. Villa-Diaz were awarded a pilot grant through PRRF to support their work in pediatric retinal research. In this episode, they pull back the curtain on what life in the lab really looks like, why research takes as long as it does, and what role donor funding plays in keeping that work moving forward. Connect with Dr. Risner at [email protected]. Connect with Dr. Villa-Diaz at [email protected]. Learn more about the Oakland University William Beaumont School of Medicine Eye Research Center (OUWB-ERC): oakland.edu/medicine/research/eye-research-center/  Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: linktr.ee/throughoureyespodcast

Jessica Dail was born weighing one pound, two ounces. She has ROP and her vision fluctuates from day to day. She also holds a job she loves, has a ham radio license, hosts her own podcast, and is writing a book. In this episode, Jessica shares her story, from fighting to learn braille in fourth grade, to building a career in public transportation, to launching Rethinking Blindness, her own podcast platform for the blind and low vision community. Resources and links mentioned in this episode: Jessica's Website: https://jessicadail.com/  Jessica's Email: [email protected]  Rethinking Blindness Podcast: https://rethinkingblindness.podbean.com/  SongSight Music Mentoring Retreat: https://songsightretreat.com/  American Council of the Blind (ACB) Radio Amateurs: https://www.acbhams.com/  Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast

In 1998, Carlos T. Reza was a correctional officer in California when he first noticed something was wrong with his vision on the firing range. Within a year, after multiple surgeries and a cornea transplant, he had lost vision in both eyes. In this episode, Carlos sits down with Jeanne McClellan to share what it was really like to navigate vision loss in his early thirties — medically retiring from the prison system, learning to use a cane, picking up braille, and then deciding, with no college experience, that he was going to earn a doctoral degree in psychology. Thirteen years later, he did. Walking across the graduation stage to a standing ovation, Carlos knew he was exactly where he was supposed to be. His message to anyone navigating vision loss is simple: accept it, embrace it, and figure out how to use it to move forward. You cannot finish a race without doing one step at a time. Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast 

Accessibility doesn't have to come with a complicated price tag or a steep learning curve. Sometimes the most powerful tools are the simplest ones. In this episode, Dawn Campbell, Chief Operating Officer of the TouchPad Pro Foundation, shares the story behind the BrailleDoodle — a tactile learning device that helps blind and low vision children and adults explore braille and independent learning through touch. And here's a bonus: it doesn't require batteries or an internet connection.  Dawn shares how the BrailleDoodle came to life out of a teacher's determination to reach his students during the pandemic, and what happens emotionally when someone picks up a device that lets them create something entirely on their own.  This is for parents who have wondered when to introduce tactile learning, educators looking for tools that actually work in a classroom, and families who want to give their child a foundation for independence. To learn more about BrailleDoodle, explore their resources, or get one into your child's hands, visit brailledoodle.org.  Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast

Most people know that research takes time. Few people understand what that actually means — the decades of experiments, the failed hypotheses, the teams of students, and the quiet persistence that eventually moves something from a lab to a clinical trial. In this episode, Dr. Kenneth Mitton, Director of the Pediatric Retinal Research Laboratory, and Nicole Giudici, MS, PA-C and member of the PRRF Board of Directors, pull back the curtain on what research really looks like. Dr. Mitton traces the decades-long journey from the discovery of the protein at the center of Norrie disease and FEVR to where Retinova Therapeutics stands today, on the cusp of an FDA clinical trial application. Along the way, he explains what it means to train the next generation of scientists and physicians in a lab made possible by PRRF donors and the families who trusted the process. This episode is for anyone who has ever wondered where their donation goes, how long research really takes, or what it means to be part of a community that is genuinely moving the needle. Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast

Breyanna Soper was diagnosed with FEVR at nine years old. By her early twenties, she had lost the majority of her functional vision. What she didn't lose was her determination or, eventually, the partner who would walk every step of that journey with her. In this special Father's Day episode, Breyanna and her husband Matthew join us for an honest conversation about what life, love, and parenthood really look like when one partner has significant vision loss. They share how they met, what it took for Matthew to truly understand what living with low vision meant, how they navigated the decision to start a family knowing their son Leland could carry the FEVR gene, and what the early months of parenthood have looked like for a family that has never been afraid to figure things out as they go. This episode is for every parent, partner, and caregiver who has ever wondered if vision loss changes what's possible. Breyanna's answer is simple: there's always a way. Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast 

Matthew Shifrin was 13 years old when a family friend typed out the first ever set of accessible Lego instructions for him on a braille typewriter. That experience changed everything. A decade later, Matthew founded Bricks for the Blind, a nonprofit that has adapted over 550 Lego sets and now reaches blind and visually impaired builders in more than 120 countries, all for free. In this episode, Matthew shares the story behind Bricks for the Blind and what it really means for a blind child to be able to build a Lego set independently — the confidence, the joy, the learning, and the sense of belonging that comes with it. He walks through how the process works, why sorting pieces is more important than most people realize, and what he has learned from the builders who write to him from all over the world. He also speaks candidly about what companies and organizations consistently get wrong when designing for blind and visually impaired people, and what it would take to do better. To explore free accessible Lego instructions, donate, or get involved as a writer or tester, visit BricksForTheBlind.org or email [email protected]. You can also find Bricks for the Blind on Instagram, Facebook, YouTube, and LinkedIn at @bricks4theblind. Want to be a guest on the podcast? If you or someone you know has a story to share — whether you've experienced a pediatric retinal condition yourself or are raising a child who has — we'd love to hear from you. Reach out to us at [email protected]. You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast