MyMacDLife - Macular Degeneration Podcast

In this inspiring episode, Sam Seavey shares his journey living with low vision and how he uses humor, advocacy, and assistive tools to navigate life with an invisible disability. From his low-vision-themed merchandise to the practical uses of a white cane for identification, Sam offers insights into the challenges and triumphs of the visually impaired. Tune in for a conversation that sheds light...

In this thought-provoking episode of My MACD Life, Sam Seavey shares a glimpse into the future of assistive technology for the visually impaired. From advancements in battery technology and wearable devices to groundbreaking innovations like contact lenses with video magnification and robotic guide dogs, Sam discusses the transformative potential of these developments. He also provides heartfelt a...

In this episode of My MACD Life, we dive into the critical issue of affordability for assistive technology devices with guest Sam Seavey. With an unemployment rate of 80% among the visually impaired community, Sam addresses the burning question: why are these devices so expensive? He shares valuable insights into the economics of assistive technology and practical solutions to make these essential...

Sam Seavey explores the economics behind assistive technology and the challenges posed by the so-called "blind tax." He highlights the transformative impact of devices like wearable magnifiers and text-to-speech tools while discussing the significant financial barriers many face. This episode dives deep into how these essential tools are priced and what can be done to make them more access...

In this episode, Sam Seavey walks us through his process of evaluating assistive devices for the visually impaired. From white canes to talking watches, he tests products in real-life scenarios and gathers insights from experts to provide honest reviews. Learn about the latest innovations in assistive technology and how they’re making a difference for the visually impaired community​

Discover how Sam Seavey built The Blind Life, a YouTube channel dedicated to reviewing assistive technology and sharing tips for living with low vision. With over 50,000 subscribers and 700 videos, Sam shares how he produces content, advocates for the blind community, and helps others navigate their journeys. Get inspired by his determination to make information accessible and empowering​

Sam Seavey shares his personal experience with Stargardt's disease, a rare inherited form of macular degeneration. From genetic inheritance to the challenges of growing up with a sibling who shares the condition, Sam provides a heartfelt and informative look at life with Stargardt's. This episode is a must-listen for anyone wanting to understand this unique condition​

In this inspiring episode of My MACD Life, Sam Seavey, founder of The Blind Life YouTube channel, shares his journey with Stargardt's disease and his mission to empower others with visual impairments. Sam discusses the evolution of assistive technology, tips for overcoming daily challenges, and the importance of determination in adapting to vision loss. From innovative devices to personal stra...

Dr. Daniel Jones shares his personal journey into neuroscience, inspired by growing up in a bilingual household with a deaf parent. This episode dives into how adaptability in the brain connects to his work in macular degeneration research, showcasing the power of determination and the courage to face scientific and personal challenges​

This episode explores the findings of the Mosaic study, which examined the impact of Geographic Atrophy (GA) on patients and caregivers. Dr. Daniel Jones discusses the emotional and functional burdens of GA, highlighting how caregiving relationships often deepen through love and support despite the challenges. Gain insights into how this research shapes better care for those living with GA​

Dr. Daniel Jones discusses the Mosaic study, a global effort to understand the burden of Geographic Atrophy (GA) on patients and their caregivers. By combining interviews and surveys, this study reveals the multifaceted ways GA affects lives and provides a roadmap for designing research and treatments that truly address patient and caregiver needs​

Dr. Daniel Jones explores the burden of Geographic Atrophy (GA) on patients and caregivers, considering economic, functional, and emotional challenges. This episode emphasizes the importance of understanding the real-world impact of GA to inform better treatment development and improve quality of life​

Dive deeper into the complement cascade and its connection to macular degeneration and Geographic Atrophy (GA). Dr. Daniel Jones explains how this overactive immune response targets healthy retinal cells and discusses how emerging treatments aim to regulate this process to preserve vision​

Dr. Daniel Jones unpacks the role of the complement system in Geographic Atrophy (GA). Learn how this critical part of the immune system can become overactive, leading to retinal damage. This episode delves into how treatments are being developed to regulate this activity and slow the progression of GA​

In this episode, Dr. Daniel Jones explains Geographic Atrophy (GA), an advanced form of dry macular degeneration. Learn about how GA develops, its unique features, and its impact on vision, including the formation of retinal lesions and blind spots. Dr. Jones also clarifies the relationship between GA and other types of AMD, emphasizing the importance of discussing this condition with a retina spe...

In this episode of My MACD Life, Dr. Daniel Jones dives into the intricacies of Geographic Atrophy (GA), its progression, and the role of the complement system in macular degeneration. He shares groundbreaking insights from the Mosaic study, which highlights the burdens faced by patients and caregivers, and explores cutting-edge research into treatments aimed at slowing GA's progression. Dr. J...

In the season 2 finale of MyMacDLife, David Wolf joins as a guest host. David Wolf is the CEO and founder of Audivita Studios, the producers of this podcast series. David is joined by Matt Prigge, lead casting director at Audivita Studios, and Meghan Elizabeth Tauck, co-author with William Douglas Horton of Living in a Time of Dying: Cries of Grief, Rage, Love, and Hope. In this segment, you’ll ge...

Kira Baldonado is back! In this part 2 episode, Jeff Ostroff and Kira pick up where they left off.  Kira's discussion of federal legislation in part 1 leads to a conversation about what states do to address the concerns of those with low vision and their families and caregivers. Kira shares research on the impact of COVID-19 on vision health, the future of new treatments, and how your story ca...

Jeff Ostroff speaks with Kira Baldonado, Vice President of Public Policy and Health at Prevent Blindness. Kira brings two decades of public health advocacy and leadership experience to the conversation. In this episode, Kira shares her current public policy and advocacy efforts and how it affects people with MacD, your families, and other caregivers. She explores how you can use your voice and you...

Host: Hilary Stunda In this episode, Hilary Stunda speaks with Dawn Prall, the creator of MyMacDLife Podcast and the founder of The SupportSight Foundation. The majority of Dawn’s work has been in the health care and social services industries. In the last decade, she has become a champion of low vision patient education, raising awareness to fund MacD research. In this episode, she shares her sto...

In this episode, Marcela Salmon speaks with Cassidy about growing up with a father, uncle and aunt with macular degeneration. Cassidy has lived around MacD for her entire life. She became aware of her father’s condition during a trip to Colorado when she realized her father couldn’t read things easily and she would help. Her father first worked for Vispero, then for LVI, a company based in Sweden...

In this episode, Hilary Stunda speaks with Jamika Porter. Jamika shares her personal story, realizing as a child of 6 that she couldn’t see as well as her peers, to adjusting to life as a school-aged young girl, to a college student and then graduate student, who received her Masters degree in communications. What she discovered along the way, after numerous doctors, was that the conditions she ha...

In this episode, Marcela Salmon speaks with Andy Burstein, founder of Accessible Pharmacy Services for the Blind, a home delivery pharmacy and health care company. Marcela expresses how excited she is to learn more about how Andy got started with the company, which is the largest, blind-owned healthcare company in the world, and the only provider of its kind. Andy explains how his business model m...

In this episode host Hilary Stunda talks with international best selling author, speaker, and happiness coach Terri Lynn Murphy. Terri has written two books: Journey to My Soul Following Divine Navigation , 1 0 Minutes to a Happier You Start Your Day In a Positive Way and Co-Authored: The Wellness Universe Self-Care Guide 25 Tools for Happiness . The conversation starts with Hilary asking Terri ho...

In This Episode Dawn Prall welcomes George and Cordelia Peters, a couple who have been married for 45 years and have learned to succeed with George’s low vision. Cordelia begins the interview by sharing how she met George while they both worked at a church radio station. Cordelia explains that George’s search for work led both George and Cordelia to their Senator’s office, and the Senator’s office...