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 on invisible disabilities and offers hope for overcoming them​.

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 advice for those newly experiencing vision loss, emphasizing resilience, system-building, and learning from others in the community. Tune in for a hopeful and forward-looking discussion on the tools and mindset needed to navigate visual impairment​

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 tools accessible. From personal grants and nonprofit support to holiday discounts and vocational rehabilitation programs, Sam offers actionable advice to help individuals and families navigate financial challenges. Tune in for expert tips and resources that bring hope and independence to those living with macular degeneration.

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 accessible​

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 strategies, Sam’s story and insights remind us that living a fulfilling life is possible with the right mindset and tools. Tune in for a conversation filled with practical advice and hope for the visually impaired community​

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 specialist​.

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. Jones also reflects on his personal journey into neuroscience and his passion for tackling the challenges of vision loss. This episode is a must-listen for anyone seeking to understand the science and humanity behind macular degeneration.

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 get an inside look into the world of audiobooks as our guests explore the profound impact of audio storytelling, for you and others living with macular degeneration, including Meghan’s co-author, William, who was recently diagnosed with MacD.

To begin this episode, Meghan speaks about her writing process, how she started her writing career and what she intended to accomplish. She recalls how her work stemmed from a series of conversations with William in 2020 that evolved into a book.  

Presenting their ideas as a dialectic, Meghan organized their separately written chapters in relation to one another. The audiobook was intended to mirror this structure. To maintain the two authors’ distinct voice quality, Audivita Studios produced the Living in a Time of Dying audiobook as a hybrid model, combining author narration with the performance of a professional voice actor, cast by Matt Prigge.  

Next, Matt walks us through the key considerations factored into casting any audiobook project: tone of voice, personality, and certain “intangible qualities.” Namely, the right person for the role comes down to the project and what the author finds important.

Next, David, Meghan, and Matt discuss the impact of audiobooks on accessibility, especially for the low-vision community. Meghan presents a philosophical perspective, saying different ways of perceiving contribute to a better world. Accessibility means more people get to participate in this collective world-building experience. Branching from this, Matt contemplates the power of the spoken word, from primeval storytelling to the new, digital age.

Next, David and Matt return to the topic of audiobook casting for non-fiction versus fiction books. It all comes down to an actor’s particular skill set. Whether casting a single voice or multiple actors, both approaches come with creative challenges and exciting opportunities. Meghan shares her experience with the audition cycle.

As the conversation unfolds, Meghan shares a letter from William addressed to our audience. The 70-year-old philosopher was recently diagnosed with wet macular degeneration. In addition, his mother had MacD, and unfortunately, without treatment she became functionally blind. His open letter is a reflection on writing and the power of the spoken word to connect people. This leads to a conversation about its deep history and the intimacy inherent to audio.

Meghan closes the podcast encouraging us to reexamine and challenge disability labels. For those who are struggling with MacD and grappling with vision loss, she underscores the gifts brought through the myriad ways of perceiving and participating together in this world.

Recommended Resources:

- https://a.co/d/bMSX1BO

- http://www.supportsight.org/

- http://www.mymacdlife.org/

- https://www.vispero.com/

- https://www.freedomscientific.com/

- https://www.freedomscientific.com/products/lowvision/omnireader/

- https://www.enhancedvision.com/

- https://us.optelec.com/

- https://www.healthyvisionassociation.com/

- https://www.novartis.com/

- https://www.centricbank.com/

- https://www.hinklestein.com/

- https://www.maculardegeneration.net/

- https://www.mymacularjournal.com/

- https://www.facebook.com/groups/mymacularjournal/

- https://www.health-union.com/

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 can make an impact on others. 

Kira explains, at the state level, change is driven by a readiness to act. There needs to be a combined effort between the state health department’s and community organizations with data to drive the allocation of funding. She advises you to “bring together the visionaries in your state” and seek out or form a coalition of people to tell the story of what's happening in your state. She adds, “It works best if it’s a groundswell up.” 

Kira names Ohio and New York as examples where this “groundswell up” approach has worked. In conjunction with Prevent Blindness, Ohio's Aging Eye Public Private Partnership created a coalition. As a result, Ohio has changed policy, practices, and resources for the visually impaired community. In New York, advocates are integrating vision health into existing efforts by the state department to improve the wellness of New York’s aging populations.

Jeff follows up with a question about what you should do if you want to replicate successful policy and advocacy efforts in your own state. Kira explains there are resources, toolkits, and templates available at the Center for Vision and Population Health at Prevent Blindness. Using state-level data and the power of your stories, The Center for Vision and Population Health provides recommended actions policymakers can integrate. 

Next, Jeff asks Kira about the impact of COVID-19. Kira discusses a correlation between COVID-19 and increased cases of myopia in young children. Additionally, many adults, like patients with MacD, struggled to maintain their crucial eye care appointments and injections. However, Kira does note some positive influences as legislators have become more willing to engage with the story about vision and health. Luckily, Prevent Blindness seamlessly transitioned to remote work and were able to continue their mission when offices were closed. 

Jeff closes with a question about hope for things to come. Kira says she sees a bright future ahead in the realm of treatments. There are new ways to treat eye diseases that have been otherwise untreatable. She cites new life-changing genetic therapies including forthcoming clinical trials for retinal diseases like MacD.

Lastly, Kira expresses optimism about the push for vision in the conversation about health care. She concludes with a message for our listeners: “The biggest change you can be a part of right now is the wave of the patient influence and care practice.” She emphasizes, there are many ways you can be a part of the conversation. Other people will benefit from your voice, your passion, and your story. 

Recommended Resources

- https://preventblindness.org/

- http://www.supportsight.org/

- http://www.mymacdlife.org/

- https://www.vispero.com/

- https://www.freedomscientific.com/

- https://www.freedomscientific.com/products/lowvision/omnireader/

- https://www.enhancedvision.com/

- https://us.optelec.com/

- https://www.healthyvisionassociation.com/

- https://www.novartis.com/

- https://www.centricbank.com/

- https://www.hinklestein.com/

- https://www.maculardegeneration.net/

- https://www.mymacularjournal.com/

- https://www.facebook.com/groups/mymacularjournal/

- https://www.health-union.com/

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 your vote to support changes in healthcare. 

Prevent Blindness is an organization that takes a public health approach to vision and eye health. They are focused on providing early detection of vision problems, getting people access to care, and helping those who may have experienced vision loss experience a high quality of life. Their key focus is Education, Advocacy, and Empowerment. 

Kira shares how her inspiration evolved over the two decades she’s worked at Prevent Blindness. First, as a mother advocating for early childcare vision screening for her son and his preschool peers; then later in life, as family members experienced vision loss due to diabetes-related eye disease. Jeff opens up about his own experiences with diabetes and the importance of annual eye exams.  

Next, Kira discusses the collaborative research initiatives between The SupportSight Foundation and Prevent Blindness. The two organizations worked together on a clinical research survey, called Mosaic, which aimed to understand how MacD impacts individuals and their caregiver, many of whom are spouses and family members. 

Next, Jeff pivots to federal policy changes under Medicare, something many of you have a vested interest in. Kira critiques the 2022 Build Back Better Act for not including vision and hearing care coverage under Medicare. She highlights, “We all need to use the power of our voice through voting to make sure we have individuals in the legislature that understand the importance of more comprehensive access to healthcare.” She mentions that access for Assistive Technology devices is particularly restrictive due to laws currently in place. They are fighting to change that. 

On the topic of health care, Prevent Blindness centers public health research and community-level interventions, with funding through organizations like the Center for Disease Control and Prevention and the National Eye Institute. Beyond the clinical research, Prevent Blindness looks to get early detection practices, education initiatives, and care for communities in need. She places a strong emphasis on using the data to understand what communities are benefiting from vision care access, and where more support is needed.  

Kira then expands on another community initiative called Aspect--a patient engagement program that offers training that empowers you to share your story of vision loss, or caretaking, with key stakeholders to improve clinical trials and care. Kira says, “It's the story of the individual that the speaks loudest in the room to drive change.” 

Kira and Jeff end part 1 of the episode by exploring the need for a balanced approach to public health research and greater funding. One that not only focuses on the new developments in scientific discovery, but also examines which populations are benefiting and which populations are underserved. 

Stay tuned for next week’s part 2!

Recommended Resources

• https://preventblindness.org/
• http://www.supportsight.org/
• http://www.mymacdlife.org/
• https://www.vispero.com/
• https://www.freedomscientific.com/
• https://www.freedomscientific.com/products/lowvision/omnireader/
• https://www.enhancedvision.com/
• https://us.optelec.com/
• https://www.healthyvisionassociation.com/
• https://www.novartis.com/
• https://www.centricbank.com/
• https://www.hinklestein.com/
• https://www.maculardegeneration.net/
• https://www.mymacularjournal.com/
• https://www.facebook.com/groups/mymacularjournal/
• https://www.health-union.com/

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 story.

Dawn Prall began working in the field of macular degeneration twelve years ago when she received an unexpected job offer from the founder of the Macular Vision Research Foundation, now known as The SupportSight Foundation. Initially, she knew little about macular degeneration; however, in the first year, she immersed fully in the role. Dawn says she had the benefit and privilege to learn from, and “geek out with” scientists and researchers at the foundation.

Hilary asks Dawn about the inspiration for the structure of The SupportSight Foundation.

Dawn traces her inspiration back to her first year, “geeking out” with the scientists and learning what an impact finding new treatments would have for millions of people. The SupportSight Foundation’s national footprint allowed Dawn to travel around the country and meet with patients, and the families of patients who had lost their vision because of macular degeneration.

As a disease specific charity, The SupportSight Foundation is solely focused on MacD. The work they do advances potential breakthroughs in medicine. 

Dawn explains the importance of the work she does for bettering people’s everyday lives. While doctors do well to take care of a patient’s eye health, TSSF and MMDL fill the gap of information that addresses things like going to work, family life, reading, and the normalcy of everyday hobbies. She acknowledges, when people lose their sight because of macular degeneration doing the things they love can be a challenge.

MacD is not as widely discussed as something like diabetes, for example, despite it being a major disease impacting so many people. Dawn explains that it’s about public health and the public’s awareness. The public is beginning to know more now than they did before because research on MacD has progressed in the past 40 years. It was important for scientist to first understand the cellular makeup of macular degeneration before they could diagnose people.

Next, Dawn explains MacD is a retina disease with two types, known as “Wet” and “Dry”. There are treatments currently available for “wet” MacD, called anti-VEGF injections. “Dry” macular degeneration is an area where more funding for research is needed because there are currently no treatment other than vitamins. She emphasizes, the foundation’s aim is to help people learn about how to cope with MacD, and help people understand the research. All donations to The SupportSight Foundation goes towards the search for a cure.

Following up on the topic of research and funding, Dawn shares how TSSF funds research projects by top scientists all over the world. She says, “Research is iterative, research makes medicine” and is not separated.

Next, Dawn dives deeper into the science behind MacD. Because MacD is a retina disease, scientists and researchers explore how the retina functions within the macula of the eye to understand what causes the macular degeneration. Dawn goes on to explain, the disease gets its name from the process with which the cells in the macula of retina die, hence the name macular degeneration. Current research being done involves cellular regeneration.

The macula is in the retina. The retina connects to the optic nerve and the optic nerve to the brain. And the retina’s job is basically a camera. “So, you don't really see with your eyes you see with your brain.” Dawn acknowledges, for people listening, whether or not they understand that part, what matters to them is there is no cure; what matters to them is what to do in the meantime, which is what TSSF and MyMacDLife do.

When asked if research for MacD has evolved over the years, Dawn responds saying, “Of course, the research is not static. A scientist’s job is discovery. Their job is understanding how that retina works and why those cells are dying. The researchers and scientists need financial support to do that”. At The SupportSight Foundation, her staff and team of researchers, lead the way. Overall, TSSF has been successful in raising close to $30 million to fuel research and public education so everybody knows the disease.

Hilary asks Dawn about her hope for a cure. Dawn expresses emphatically, she is not only hopeful, but optimistic. It's just a matter of time, or else I wouldn’t be doing the work she does. She admits, she would love to work herself out of a job, because that means they have accomplished their goal. And at this moment, she adds, they are a lot closer than they’ve ever been. “Every time somebody discovers something, that moves that needle.”

Dawn connects her passion for this cause to her values. In her upbringing, as a “sales brat” Dawn was accustomed to moving around often. Always the new girl in school, she learned the importance of building relationships and being approachable. That helps to create funding. She cites her Midwestern values as intrinsic and entrenched in who she is.

“You have to believe in something and stand for something and my family values were more about making sure that there is a passion, there is something meaningful in your life. And then you just build your life around that.”

Dawn expresses what an honor and a privilege it is to make a difference in people's lives. MyMacDLife Podcast has given The SupportSight Foundation a microphone, to bring people together, tell their stories, and create a community. It enables the foundation to do more in a powerful way.

Hilary agrees, saying she finds the MMDL podcast gets rid of despair. She says, with the abundance of resources available, “patients can hope, at the end of the day, they're not as lost as they think they might be." Dawn says the podcast aligns with the personality and value of the foundation: intimate, relationships-centric, and warm-big.

Dawn emphasizes that patient advocacy is key to her work. The power of advocacy comes from knowledge of the disease and sharing the experiences people go through losing their vision. First, sharing with their friends, family, and caregivers. Then, sharing it with the rest of the world.

Dawn acknowledges, “This world is not set up for low vision.” She reflects on making brownies, the directions were printed was brown on brown. Initially, advocacy focused on awareness of MacD. Now, it's expanded to advocate for everyday accessibility on computers and assistive technology. There's a force behind advocacy when MyMacDLife gets everybody who's listening and everybody who's affected by it to join together.

Dawn invites listeners to learn more at mymacdlife.org, donate to The SupportSight Foundation, share their story, and help build community.

In the last segment, Dawn speaks with Mike Wood from Vispero. Mike shares information about the RUBY Family products by Freedom Scientific, a line of Assistive Technology. The RUBYs are a series of portable video magnifiers that come in multiple sizes that use a camera lens to enlarge and sharpen the image of any page of text. For example, when checking a price tag, or reading a menu. To learn more about the RUBY Family, go online to www.vispero.com or call their toll-free number, 1-800-444-4443. Mike lets listeners know you can go to freedomscientific.com to listen to an online webinar about how to use your Ruby video magnifiers.

Dawn ends the episode emphasizing that MyMacDLife is a resource above all, dedicated to supporting patient education.  

Recommended Resources

- http://www.supportsight.org/

- http://www.mymacdlife.org/

- https://www.vispero.com/

- https://www.freedomscientific.com/

- https://www.freedomscientific.com/products/lowvision/rubyproductfamily/

- https://www.enhancedvision.com/

- https://us.optelec.com/

- https://www.healthyvisionassociation.com/

- https://www.novartis.com/

- https://www.hinklestein.com/

- https://www.maculardegeneration.net/

- https://www.mymacularjournal.com/

- https://www.facebook.com/groups/mymacularjournal/

- https://www.health-union.com/