Through Our Eyes: Recent Episodes
The Pediatric Retinal Research Foundation
Welcome to the “Through Our Eyes” podcast by the Pediatric Retinal Research Foundation. We are a community of visually impaired young adults talking about what it’s like to navigate through high school, college, career, and beyond. We tap into our experiences and cover a wide range of topics providing you with actionable tips and strategies you can implement in your own life.
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 throughoureyes@prrf.org.
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 throughoureyes@prrf.org.
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 throughoureyes@prrf.org.
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 throughoureyes@prrf.org.
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 info@bricksfortheblind.org. 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 throughoureyes@prrf.org.
You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast
When Mike Mulligan went to get contacts before a high school basketball game, he had no idea that appointment would change the entire trajectory of his life. He was diagnosed with Coats' disease at 18. Mike then built something he never expected: a career dedicated to helping others navigate vision loss with confidence, independence, and possibility.
In this episode, Mike shares his journey from diagnosis to becoming both a Certified Orientation and Mobility Specialist and a Certified Vision Rehabilitation Therapist, and the work he does today through Blind On the Move. He breaks down why Braille still matters in a world full of audio technology, how assistive tech is opening doors that didn't exist a decade ago, and what families can do right now to help their child build independence — even when it feels easier to just step in and do it for them.
To learn more about Mike's work and find resources for the blind and low vision community, visit BlindOnTheMove.com or reach out to Mike directly at mike@blindonthemove.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 throughoureyes@prrf.org.
You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast
When Amber Bobnar's son Ivan was diagnosed with Leber's Congenital Amaurosis at just a few months old, she found herself searching for answers, resources, and most of all, connection. What she found instead was a private email listserv full of invaluable information that no one outside of it could access. So she decided to change that.
In this episode, Amber shares the story behind WonderBaby.org — the resource she built that has grown into a meaningful home for parents of children with visual impairments and multiple disabilities. She opens up about the early days of Ivan's diagnosis, the unexpected challenges of advocating for a medically complex child in a place with limited resources, and the hard-won lesson she wishes she had learned sooner: that love and connection matter more than any resource she could gather.
To explore WonderBaby's library of resources, articles, and community for families raising children with visual impairments, visit the website: WonderBaby.org
Follow WonderBaby on Facebook: https://www.facebook.com/wonderbaby.org/
You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast
Dr. Antonio Capone has spent his career changing what is possible for children with retinal diseases. In this episode, he shares the journey from his early start in psychiatry to finding his calling in pediatric retina, where precision surgery meets long-term impact.
You'll hear how the field evolved over decades, why severe ROP cases declined, and how training specialists around the world helped bring sight-saving care closer to home for families. Dr. Capone also explains how PRRF expanded beyond research to support parents raising children with rare retinal disease, and why the greatest challenge today is not always medical, but helping young adults move from education to independent, employed lives.
Read Jeanne McClellan's blog post with Dr. Capone on our website: https://prrf.org/a-conversation-with-dr-tony-capone/
Join us April 17-19, 2026 for a powerful weekend that educates, inspires, and unites. Saturday's Family Connection Conference brings education and resources to families affected by pediatric retinal diseases, while Sunday's Hope for Vision Walk brings together our community to fund critical research and programs. Participate in one or both events, either virtually or in person at Oakland University in Rochester, MI: https://prrf.org/upcoming-events/united-in-hope/
You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast
What does it actually take to get a toddler to wear an eye patch every day for five years? According to Cathy Thompson, founder of Patch Pals, it takes routine, distraction, flexibility, celebration — and a patch that a child actually wants to wear.
In this episode, Cathy and her daughter Mackenzie share the story behind Patch Pals: how a cataract diagnosis led to a daily patching battle, how Cathy's homemade solution changed everything, and how that idea grew into a business that has quietly reshaped how families and doctors approach amblyopia treatment. Now in her thirties, Mackenzie reflects on her patching years and offers a message directly to the kids and parents who are in the thick of it today.
Whether you're just starting the patching journey or struggling to stay consistent, this episode is the encouragement and practical guidance you deserve to hear.
To explore the Patch Pals collection of patches, resources, activity ideas, and their community of happy patchers, visit PatchPals.com.
Join us April 17-19, 2026 for a powerful weekend that educates, inspires, and unites. Saturday's Family Connection Conference brings education and resources to families affected by pediatric retinal diseases, while Sunday's Hope for Vision Walk brings together our community to fund critical research and programs. Participate in one or both events, either virtually or in person at Oakland University in Rochester, MI: https://prrf.org/upcoming-events/united-in-hope/
You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast
Jule Ann Lieberman's path into assistive technology grew out of curiosity, persistence, and a desire to stay independent. What began as an interest in learning more about technology evolved into graduate study, professional certification, and a career dedicated to helping blind and low vision individuals access the tools that support school, work, and daily life.
In this episode, Jule Ann shares her journey as both a low vision professional and someone living with vision loss. She reflects on teaching future specialists, supporting clients of all ages, navigating public transportation with a guide dog, and evaluating emerging tools like smart glasses and AI. This conversation centers on adjustment, advocacy, and the practical ways technology can strengthen confidence and independence.
Learn more about TechOWL here: https://techowlpa.org/
Join us April 17-19, 2026 for a powerful weekend that educates, inspires, and unites. Saturday's Family Connection Conference brings education and resources to families affected by pediatric retinal diseases, while Sunday's Hope for Vision Walk brings together our community to fund critical research and programs. Participate in one or both events, either virtually or in person at Oakland University in Rochester, MI: https://prrf.org/upcoming-events/united-in-hope/
You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast
As the founder of the Children's Low Vision Resource Center, Paula Korelitz spent decades turning advocacy into action for children with visual impairments and their families. In this conversation, she walks through the early days of meeting families in the NICU, building resources that did not exist, and connecting education, research, and real-life learning in meaningful ways.
Paula shares why active learning changed her practice, how the Resource Center introduced families to tools, teaching strategies, and community support, and what she believes parents, educators, and young adults need to hear today. This episode highlights the power of early advocacy, thoughtful education, and one voice willing to build what systems had not yet created.
Join PRRF April 17-19, 2026 for a powerful weekend that educates, inspires, and unites. Saturday's Family Connection Conference brings education and resources to families affected by pediatric retinal diseases, while Sunday's Hope for Vision Walk brings together our community to fund critical research and programs. Participate in one or both events, either virtually or in person at Oakland University in Rochester, MI: https://prrf.org/upcoming-events/united-in-hope/
You can find more episodes and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast
Chef and educator Debra Erickson, founder of The Blind Kitchen, shares how vision loss from retinitis pigmentosa led her from culinary school to building a resource hub for blind and low-vision cooks. She discusses adaptive tools, smart safety strategies, and the freedom that comes when cooking feels possible again for kids, teens, and adults.
You'll hear practical ideas for building kitchen confidence, from simple nonvisual techniques like keeping a sink of soapy water ready, to tools such as work trays, cut gloves, and predictable setups for blind cooks. Debra shares ways families can support young children learning to help in the kitchen, how teens and adults move from fear to independence, and why step-by-step exposure to tools and heat builds real skills over time.
Explore the products mentioned in this episode, video resources, recipes, and more at theblindkitchen.com
Follow The Blind Kitchen on social media:
· Instagram: @theblindkitchen1
· Facebook: @theblindkitchen
· LinkedIn: @Debra Erickson – The Blind Kitchen
· YouTube: @theblindkitchen
You can find more episodes, upcoming events, and ways to get involved with the Pediatric Retinal Research Foundation here: https://linktr.ee/throughoureyespodcast
When opportunity called, Wallace Stuckey answered by moving from Washington, DC to London to pursue his master's degree. His story is about curiosity, courage, and the practical side of starting a new life in a global city.
Through stories of learning new systems, meeting people from around the world, and finding accessibility in unexpected places, Wallace reminds us that growth often begins the moment we step outside what's familiar.
You can find more episodes, upcoming events, and ways to get involved with the Pediatric Retinal Research Foundation on our website at prrf.org
Connect with us here: https://linktr.ee/throughoureyespodcast
In this heartfelt episode of Through Our Eyes, host Nicole Giudici welcomes Lisa LoVasco and her daughter Aria to share their emotional journey navigating Aria's diagnosis of a rare retinal disease, FEVR. As a new mom, Lisa recalls the overwhelming flood of unfamiliar information during that first doctor's visit, wishing for a simple, doctor-backed resource folder to guide families away from the chaos of online searches. Feeling powerless in the face of a condition with no family history, Lisa quickly sought community through PRRF—initially via early connections and Dr. Capone's guidance—turning involvement into a healing process. For over five years, they've embraced events like the Hope for Vision Walk and Family Connection Conference, transforming isolation into tangible action for research and support.
The episode shines with stories of resilience, like Aria's instant bond with Mia Doben, another young girl with FEVR, sparked at a conference meet-and-greet that felt like a "dream come true." Their friendship has blossomed through playdates, shared adventures, and mutual parent support, easing the loneliness of being "the only one" at school or in the neighborhood. Lisa, a Family Advisory Committee member, offers advice for new families: stay hopeful, lean on doctors for facts, and seek community to combat the unknowns. Aria chimes in with walk highlights—donuts, hill races, and glittery hair—while sharing her vibrant life of choir, violin, dance, and upcoming 11th birthday sleepover. Tune in for inspiration, and join the Hope for Vision Walk on September 28, 2025, at prrf.org to celebrate connections that fuel hope and research.
Don’t forget to like, share, and leave a comment to help us spread hope to more families. Together, we can make a difference.
Connect with us here: https://linktr.ee/throughoureyespodcast
In this episode of the Through Our Eyes Podcast, we speak with Sheldon Lewis, a dedicated professional and family man who lives with a rare inherited condition called choroideremia, which causes progressive vision loss. Sheldon shares his journey, starting with his diagnosis at age nine and navigating the challenges of vision loss without much familial support in his early years. Despite these obstacles, he built a career in the textile industry, married, and raised two sons who are free of the condition. Sheldon’s story takes a pivotal turn in his mid-forties when a fall due to his worsening vision led him to embrace the white cane, opening doors to greater independence and community support. His resilience shines through as he transitioned in his sixties to a fulfilling career in accessibility technology, working with a company that provides free website accessibility solutions for disability-focused nonprofits.
Sheldon’s story is one of perseverance and adaptability, as he reflects on overcoming fear, learning to use tools like screen readers, and finding purpose through advocacy and creative pursuits like songwriting with AI tools. He emphasizes the importance of trying new things despite challenges, engaging with his grandchildren to foster understanding, and encouraging parents to discuss future possibilities with children who have vision loss. Sheldon also offers practical advice for the sighted community, urging them to communicate directly with visually impaired individuals and offer help respectfully. His work on a new website, Vision Adventurers, aims to inspire and provide resources for the visually impaired community. The episode concludes with a heartfelt message about resilience, humor, and the power of community, leaving listeners inspired by Sheldon’s ability to reshape his future despite vision loss.
Don’t forget to like, share, and leave a comment to help us spread hope to more families. Together, we can make a difference.
Connect with us here!: https://linktr.ee/throughoureyespodcast
Join us on this heartfelt episode of Through Our Eyes by the Pediatric Retinal Research Foundation, where Megan, a devoted mother, shares her journey raising her visually impaired son, David. Diagnosed with a rare pediatric retinal condition at six weeks old, David faced significant challenges, but with the support of an exceptional Teacher of the Visually Impaired (TVI), an inclusive school, and a tailored Individualized Education Program (IEP), he’s thriving in first grade. From learning Braille to playing goalball with classmates, David’s story highlights resilience, advocacy, and the power of community in ensuring every child can succeed. Tune in for an inspiring conversation about navigating school life, fostering inclusivity, and empowering children with visual impairments. Visit PRRF.org for more on supporting families and research into rare retinal conditions. #ThroughOurEyes #VisualImpairment #InclusiveEducation
Don’t forget to like, share, and leave a comment to help us spread hope to more families. Together, we can make a difference.
Connect with us here!: https://linktr.ee/throughoureyespodcast
🎙️ Meet Laura, a remarkable young woman from Michigan living with FEVR, a rare retinal disease. Diagnosed at 18 months, she’s blind in one eye but embraces life fully, from her job in memory care to training her service dog. Laura shares how her family’s support and an IEP helped her thrive, urging others: “FEVR doesn’t define you—it’s just part of your story.” Tune in for her inspiring journey and visit PRRF.org for more on pediatric retinal research! #RareDisease #Podcast #ThroughOurEyes
Don’t forget to like, share, and leave a comment to help us spread hope to more families. Together, we can make a difference.
Connect with us here!: https://linktr.ee/throughoureyespodcast
Wallace Stuckey returns to the Through Our Eyes podcast for an in-depth conversation with Dr. Capone of the PRRF. From early childhood surgeries to navigating significant milestones like high school, college, and grad school at King's College in London, Wallace discusses overcoming challenges with the support of his family, medical team, and assistive technology. He offers insights on advocating for accessibility, embracing technology, and building a robust support system, while also sharing his passion for public service and personal hobbies like walking accessible trails and traveling. This fireside chat highlights resilience, determination, and the power of community in achieving success.
Don’t forget to like, share, and leave a comment to help us spread hope to more families. Together, we can make a difference.
Connect with us here!: https://linktr.ee/throughoureyespodcast
In this heartfelt episode of the "Through Our Eyes" podcast, host Luisa Recchia sits down with Brianna Soper (formerly Willett) to discuss her recent wedding journey. Brianna, who has been visually impaired since her childhood due to retinitis pigmentosa, shares how her condition influenced the wedding planning process—from selecting her dress with the help of her supportive uncles to relying on her husband Matt for visual descriptions of centerpieces and other details. She highlights the importance of photography and videography in capturing moments she could later experience up close, like seeing Matt’s reaction as she walked down the aisle. Brianna also touches on unique adjustments, such as memorizing her wedding vows and navigating the challenges of changing her name post-marriage. The episode wraps up with a look into her future plans, including saving for a house and exploring options for starting a family. Tune in for an inspiring conversation about love, resilience, and celebrating life’s big moments. Plus, don’t miss details on the upcoming Family Connection Conference on April 26, 2025!
Don’t forget to like, share, and leave a comment to help us spread hope to more families. Together, we can make a difference.
Connect with us here!: https://linktr.ee/throughoureyespodcast
In this inspiring episode of Through Our Eyes, we relaunch into a new season of the show with a powerful story of hope, resilience, and advocacy. Host Lisa Recchia welcomes Colin Walls and his father, Chuck, to share their journey navigating Colin’s diagnosis of a rare retinal disease at just four years old. From early challenges and uncertainties to becoming advocates and champions for groundbreaking research, the Walls family’s story offers valuable insights for anyone facing the unknown.
Guided by our podcast assistant, Brianna Soper, the conversation dives into their experiences, the impact of the Pediatric Retinal Research Foundation, and Colin’s inspiring determination to live a full and vibrant life. Whether it’s overcoming challenges in education, finding joy in hobbies like working on cars, or embracing the power of advocacy, this episode is a must-listen.
Stay tuned until the end for details about the upcoming Family Connection Conference in April 2025—a unique event bringing together families, experts, and advocates in the fight against retinal diseases.
Don’t forget to like, share, and leave a comment to help us spread hope to more families. Together, we can make a difference.
Connect with us here!: https://linktr.ee/throughoureyespodcast
In this episode we speak with Amy Wilson, founder of the Safety Positive Foundation, who shares her journey from being a tomboy growing up in Missouri, diagnosed with juvenile macular degeneration at age 10, to accepting her blindness and launching a nonprofit.
Amy's foundation addresses personal safety needs in the blind community, offering services such as peer support groups, verbal advocacy training, and self-defense courses, all accessible virtually. She emphasizes the importance of personal safety, mental health, and dignity for the blind and visually impaired.
Amy also shares her personal passion for self-defense, influenced by her wrestling and judo background, and highlights the impact of her work on individuals in the blind community. The podcast concludes with details on how listeners can support the Safety Positive Foundation through donations, awareness, and getting involved.
Connect with Amy and the the Safety Positive Foundation:
https://www.safetypositivefdn.org/
https://www.instagram.com/blindamy_/reels/?hl=en
In this episode of the "Through our Eyes" podcast by the Pediatric Retinal Research Foundation, hosts Lisa Recchia and Brianna Willett engage with Taengkwa Sturgill, a 22-year-old student studying special education. Tang shares her journey with retinopathy of prematurity, detailing her adoption from Thailand and the challenges he faced due to his visual impairment. She expresses deep gratitude for the care and support he received through the Pediatric Retinal Research Foundation and Associated Retinal Consultants, which helped maintain her light perception through surgeries and ongoing treatments.
Tang discusses her passion for special education, driven by her own experiences and a desire to inspire others facing disabilities. Shee emphasizes the importance of inclusivity and encouragement in both education and everyday life. Looking ahead, Tang envisions a career dedicated to teaching young children with special needs, aiming to make a lasting impact by fostering positivity and resilience.
Find us on social here:
https://linktr.ee/throughoureyespodcast
This podcast is brought to you by the Pediatric Retinal Research Foundation. https://www.pediatricrrf.org/
In this episode of the Pediatric Retinal Research Foundation podcast, Hannah, a content creator, discusses her journey with vision loss and how she has utilized social media as a therapeutic outlet. Hannah began creating videos on TikTok and YouTube in 2023 to cope with her vision loss, which started around three years prior. With the tool of humor, she transformed the challenges of her condition into clever videos, receiving laughs and positive feedback from friends and family. This creative process helped Hannah manage her difficulties while making others laugh, serving as her personal therapy. Despite her initial reluctance to acknowledge her vision impairment, Hannah found solace in the supportive community that her videos fostered, and she continues to share her experiences candidly and humorously.
Hannah also delves into her background, explaining that she was born with cone dystrophy, a rare genetic retinal disease that gradually worsened her vision. Initially, she maintained a near-normal life, working as a professional photographer for 13 years. However, in 2019-2020, her condition rapidly deteriorated, leaving her with only a pinhole of vision in one eye. This transition was tough, especially during the pandemic, but her family and friends provided crucial support. Hannah shares that joining online communities and connecting with others who have similar experiences was invaluable. She stresses the importance of communication and patience, advising those newly experiencing vision loss to seek support and be open about their needs.
In this podcast episode, we hear a compelling narrative of resilience and adaptation from a Aisha, who experienced sudden vision loss due to a rare condition called pseudo tumor cerebri or idiopathic intracranial hypertension. Aisha shares her journey from diagnosis in adolescence to navigating high school and transitioning to a specialized blind school, providing insight into the challenges and triumphs of adjusting to a new way of life. After graduating, Aisha embarked on a vocational rehabilitation program, eventually securing a job with the assistance of employment specialists. This episode illuminates the importance of support systems, adaptability, and determination in overcoming adversity and pursuing one's goals despite unexpected obstacles.
Connect with Aisha Na'Sha here: https://linktr.ee/AishaNasha
Connect with us here!: https://linktr.ee/throughoureyespodcast
In this insightful episode of the Through Our Eyes podcast, hosts Luisa and Brianna are joined by special guest Shelby Craig to explore the world of accessible gaming. Together, they delve into the challenges and triumphs of navigating video games for individuals with visual impairments. Shelby shares her experiences and expertise, shedding light on the strategies and tools she utilizes to enjoy a variety of games, from World of Warcraft to flight simulators. The conversation touches on the importance of accessibility in gaming, advocating for developers to prioritize inclusive design. Through personal anecdotes and practical insights, this episode illuminates the evolving landscape of accessible gaming and the transformative impact it has on individuals and communities.
Connect with us here! - https://linktr.ee/throughoureyespodcast
This episode features Heather Hutchison, a blind social media influencer, musician, and author. Heather shares her journey of navigating life as a blind individual, her experiences in the music industry, and her advocacy work.
She discusses her background in music, starting with piano lessons at a young age and eventually releasing albums and singles. Heather explains how she learned to play music by ear rather than reading Braille sheet music, finding it more intuitive to memorize music through listening.
Throughout the conversation, Heather reflects on her experiences with schooling, her supportive family, and her career in music. She highlights the importance of representation and accessibility in the music industry and shares advice for aspiring musicians, emphasizing the value of practice, performance, and networking.
Overall, the episode provides insight into Heather's personal journey as a blind musician and advocate, offering inspiration and encouragement for listeners interested in pursuing their passions despite challenges.
This episode features Heather Wolf, who shares her personal experiences living with retinitis pigmentosa (RP) and deafness. Heather discusses her journey of being diagnosed with RP in college and the challenges she faced due to progressive vision and hearing loss.
Heather explains her college experience and the accommodations she received, such as orientation and mobility training and assistive technologies like high contrast keyboards and magnification software. Despite facing social challenges due to her disabilities, Heather pursued a major in special education but later reconsidered due to the increasing difficulties.
The conversation delves into Heather's recent move and the challenges she encountered as a person with disabilities, including finding accessible housing and navigating support services. Heather also shares her experience learning Braille and recommends a free resource called Hadley Institute for the Blind and Visually Impaired for Braille education.
Overall, the episode highlights Heather's journey living with multiple disabilities, the importance of accessibility and support services, and her ongoing efforts to adapt and thrive despite the challenges she faces.
Charlie Kramer, a 30-year-old living with retinitis pigmentosa (RP), shares his experiences growing up with a family history of RP and how it shaped his perspective. He proudly uses his cane every day and works as a life coach for people with disabilities, advocating for inclusivity and equality. He discusses his journey of accepting his disability and emphasizes the importance of awareness and seeking support. Charlie offers coaching programs to help individuals navigate challenges and build confidence. He highlights the difference between coaching and therapy, stressing the action-oriented approach of coaching. Charlie also discusses the expansion of his business, including hiring support coaches, and invites individuals to connect with him for coaching opportunities. Finally, he shares advice for those dealing with disabilities, emphasizing awareness, seeking support, and connecting with the disability community.
Link: https://www.charliekramervision.com/
Welcome to season 2 of the Through Our Eyes Podcast by the Pediatric Retinal Research Foundation! In this episode, Bri gives a life update and fills you in on everything coming up in season 2 of the podcast and some news and events with the PRRF!
This episode is the conclusion of the conversation with Anastasia and Gia! These two extraordinary young women talk more about their daily life, training regimen, and how their long distance friendship keeps them going day to day.
Don't miss out – hit that subscribe button and join us on a journey that's all about smashing expectations, celebrating victories, and embracing the power of the human spirit. Get ready to be inspired, motivated, and totally blown away by Anastasia Pagonis & Gia Pergolini. 🏆🎉
This episode dives into the extraordinary journey of two remarkable Paralympic gold medalists, Anastasia & Gia. We uncover the awe-inspiring stories that have defined their lives and their beautiful friendship as fellow blind swimmers.
Don't miss out – hit that subscribe button and join us on a journey that's all about smashing expectations, celebrating victories, and embracing the power of the human spirit. Get ready to be inspired, motivated, and totally blown away by Anastasia Pagonis & Gia Pergolini. 🏆🎉
Welcome to part 3 of the conversation with Dr. Kimberly Drenser! This episode dives into CTR27, the basis for the idea behind Caeregen Theraputics, the history of the company and the work they've done to create medical solutions for retinal diseases.
Your host, Dr. Patrick Droste dives into this captivating three-part series that covers innovative and promising research for the future. We invite you to share this episode with friends and family!
Welcome to part 2 of the conversation with Dr. Kimberly Drenser! This episode navigates the landscape of research & development challenges and the amazing scientific breakthroughs that Dr. Drenser has been involved with. This episode starts with the story of how Dr. Drenser became interested in the field of ophthalmology and continues by highlighting the milestones in the industry and her career.
Your host, Dr. Patrick Droste dives into this captivating three-part series that covers innovative and promising research for the future. We invite you to share this episode with friends and family!
This episode embarks on a journey through the world of groundbreaking research with our special guest, Dr. Kimberly Drenser, who holds the prestigious title of what is called a double doctor (i.e. she holds two medical degrees).
Additionally, Dr. Drenser engaged in a two-year retinal fellowship with associated retinal consultants Dr. Anthony Capone and Dr. Michael Trese.
Your host, Dr. Patrick Droste dives into this captivating three-part series that covers innovative and the promising research for the future. In part one, we will explore the fundamental definitions of principles that underpin genetic research and particularly genetic eye disease. Part two will navigate the captivating landscape of research development challenges, and part three will investigate pivotal moments that shape the trajectory of a scientific breakthrough from early-stage investigations to rigorous experimentation.
Listen to this empowering and eye-opening episode that invites listeners into the extraordinary world of Shelby, a resilient and inspiring young woman who was born blind. Throughout this episode, Shelby explores the many aspects of her morning routine, shedding light on how she navigates her world. From waking up and orienting herself to the day ahead to choosing outfits, preparing meals, and getting ready for work or school, each episode delves into the practical, emotional, and creative aspects of Shelby's mornings.
Dr. Phillip Hessburg is an authority on driverless automobiles, and this episode is all about what artificial vision in automobiles means for the visually impaired community. Interestingly, Dr. Hessburg was also on the organization of Retinopathy prematurity, associate Retinal Disease Board for many years, and he has a long history with our organization.
This episode dives into the future of mobility for the visually impaired and is a fantastic preview of technology that has the potential to transform the lives of many.
Through Our Eye's is again looking at the Parent's Perspective. We speak with Alissa Williams, the mother of Brandon Warner, who was featured in episode #2.
Alissa outlines the challenges she faced in identifying Brandon's condition early in life and gives a detailed story that can be very helpful for mothers that find themselves in her shoes.
Alissa's story will take you on a journey. From learning braille to learning calculus, graduating college, and pursuing employment, Alissa and Brandon's story exhibits the possibilities available to the visually impaired community.
This podcast is made possible by the Pediatric Retinal Research Foundation.
This week's episode is about the history of the white cane for the visually impaired. Shelby, who uses the cane every day, will talk about her experience, and Dr. Droste will talk more about its history. If you're someone who values inclusivity and accessibility, you will be blown away by the powerful insights and perspectives shared in this episode.
This episode talks about the evolution of the white cane and its significance in the blind community, as well as the challenges and triumphs that Shelby and Dr. Droste have faced in their respective journeys.
If you're interested in learning more about the history of the white cane or just want to hear some truly inspiring personal stories, we highly recommend listening to this podcast. Trust us; it's well worth your time. #whitecanehistory #inclusivity #accessibility #podcastrecommendation #inspiringstories #empathy #understanding #compassion #blindcommunity
In this episode, we highlight one major challenge to living independently for the visually impaired, cooking. Bre has a particular interest in cooking and walks us through some of the challenges that she has overcome as a visually impaired person in the kitchen.
Regarding working in the kitchen, Bre prefers baking over other methods. Here's a short excerpt from this episode: "...one of my favorite tools that I have are the large print measuring cups. These measuring cups are high contrast and has something on the handle part that's tactile, with a little bit of braille on it."
This episode is packed with all kinds of special tips and tricks for visually impaired people that are getting ready to start learning more about living independently!
Meet Wallace Stuckey, a young man that is a true inspiration. Wallace was born with retinopathy prematurity and grew up legally blind. Wallace faced many obstacles but refused to let them hold him back. Through hard work and determination, he graduated from college and is now a valued US House of Representatives employee as a Website Compliance Accessibility Analyst. Wallace's story shows us that anything is possible with perseverance and a positive attitude. Let's give a round of applause to this amazing individual! 👏🏼🙌🏼
In episode 12, Dr. Drosti speaks with Wallace, who has a relatable story of growing up into a young professional who was diagnosed with retinopathy prematurity as a child.
We introduced Shelby in episode 3, and here in episode 11, we get to hear all the awesome details of what Shelby has accomplished from her parents. Shelby is quite humble, and her parents Bill & Debbie, have A LOT to share regarding the many adventures and exploits of their brave and ambitious daughter.
Bill & Debbie Craig also share their story of the events leading up to receiving the news of Shelby's blindness and their approach to parenting.
"It was a very steep and quick learning curve for us. We had to struggle with having two kids. One of them with a severe disability and trying to navigate through a school system that was not very supportive.
Fighting school districts and fighting insurance companies. It was a very intensive time for us. We'd been married five years before we decided to have kids, this was definitely a shock. We had to learn as we went. Both Shelby and her twin had epilepsy, so we were not only battling that, we were both full-time and, you know, fully employed and trying to juggle two babies back and forth to Michigan's surgeries, unsure of what the future holds." - Bill Craig
In this episode, we talk with Brey and her dad, Brett who states:
"...When Brey was younger and first diagnosed, there were the initial reactions of just trying to understand what fever is and what the implications are, and then asking what steps we need to take to help her, and what are the long-term implications."
We introduced Brey in episode 1, and here in episode 10, we get to hear more of her story as well as her Dad's paternal perspective on raising a child with FEVR.
Brett's heartwarming stories of raising young Brey will make you laugh, cry, and understand what the opportunities and challenges are when raising a child with FEVR.
An orphan disease is a rare disease or condition that affects fewer than 200,000 people in the United States. Oftentimes, due to the rarity of these diseases and the lack of a large patient population, finding support and resources for treatment options is a challenge. Receiving a diagnosis of one of these rare diseases can leave an individual or family with a very isolated and lonely feeling. In this episode, Lisa Lovasco talks about how their family navigated her daughter Aria's FEVR diagnosis. The story of the Lovasco family, like many others starts with feelings of loneliness and despair. However, perseverance lead to finding community, support groups and advocacy initiatives that instilled hope for their journey.
“…For most of us, our problem is not that we can’t see. No, the problem is that society holds low expectations of us as blind people… there’s so much in the world that is inaccessible, but we’re capable of so much when we know that we can do it and when we have a team of people to support us….”
This quote is from Amy Albin, who was born with Leber’s congenital amaurosis, an eye disorder that primarily affects the retina that rendered Amy blind from birth. Amy is now getting ready to graduate college and enter the workforce. In this episode, Amy tells the fantastic story of navigating life and how others in similar scenarios can do the same.
Jennifer & Ashley Zuckerman have lived lives of overcoming impossible circumstances. Now seniors in High School, these fraternal twins were born 28 weeks premature with less than a 25% chance of survival. This was the first of many challenges that Jennifer, Ashly, and their family would face together.
Due to Jennifer's premature birth, she developed retinopathy of prematurity (ROP), yet her sister Ashley had relatively normal eyesight. And that's how their story starts - one sighted sister and one blind sister. Despite this challenge, a beautiful relationship emerged that is a shining example for all siblings from all walks of life.
This interview between the Zuckerman sisters and the PRRF will have you laughing, crying, and perhaps rethinking your perspective on interacting with the visually impaired and anyone with a disability.
In this special edition of the Through Our Eyes podcast, we are honoring the life of Dr. Michael Trese, one of the all-time greatest contributors to the field of pediatric retinal research and disease. He, along with his partner Dr. Antonio Capone share with us many of their experiences of working together over the past ten years to develop research that has effectively impacted the lives of countless children and will continue for generations to come.
This interview was recorded shortly before Dr. Trese's passing on 10/21/22 and we are very excited to have the privilege of sharing this intimate conversation with our listeners in this very special episode.
The “Through Our Eyes” podcast is brought to you by the Pediatric Retinal Research Foundation. We are a community of visually impaired young adults talking about what it’s like to navigate high school, college, career, and beyond. We share our experiences and cover a wide range of topics providing you with actionable tips and strategies that you can implement in your own life.
In this episode, Dr. Droste and Bre talk about the complexities of navigating higher education. Bre grew up as a sighted child, yet throughout her high school career, her sight deteriorated. Bre faced many obstacles in the transition from a sighted to an unsighted world, and as a legally blind college student, Bre discovered a wealth of resources that unsighted college students across the globe can access. Bre's insights and experiences outlined in this episode can help equip students and parents to face these challenges.
The “Through Our Eyes” podcast is brought to you by the Pediatric Retinal Research Foundation. We are a community of visually impaired young adults talking about what it’s like to navigate high school, college, career, and beyond. We share our experiences and cover a wide range of topics providing you with actionable tips and strategies that you can implement in your own life.
In this episode Dr. Droste and Shelby talk about the complexities of navigating the education system as a blind student. Starting from a very young age Shelby recounts her experiences and gives insights and options of how to respond to specific challenges. Topics include navigating the dynamics of IEP meetings, the importance of learning braille, how to relate with sighted classmates and much more.
The “Through Our Eyes” podcast brought to you by the Pediatric Retinal Research Foundation. We are a community of visually impaired young adults talking about what it’s like to navigate high school, college, career, and beyond. We share our experiences and cover a wide range of topics providing you with actionable tips and strategies that you can implement into your own life.
Shelby was born with FEVR and ROP and has been blind most of her life. She is now a 26-year-old college graduate, living with her parents and actively applying for jobs. In this episode, she tells her story of both challenges and successes.
Brandon has been blind since birth and was diagnosed with FEVR. He earned an undergraduate degree in economics and a master's degree in vision rehab therapy. He is now employed by the University of Michigan teaching students about accessible technology and checking the accessibility of websites and apps that the university uses. In this episode, he shares his story along with recommendations for other blind young adults.
Breyanna is 27 and was born sighted but was diagnosed with FEVR at age 9. She navigated high school with limited vision and had her driver's license. By the time she was 21, she lost most of her vision and ultimately her license. Listen to this episode to hear more about her story and what she’s got planned for her future.
Welcome to the “Through Our Eyes” podcast by the Pediatric Retinal Research Foundation. We are a community of visually impaired young adults talking about what it’s like to navigate through high school, college, career, and beyond. We tap into our experiences and cover a wide range of topics providing you with actionable tips and strategies you can implement in your own life.