Do I Have Geographic Atrophy?

Guest: Dr. Daniel Jones, PhD

Executive Director and Medical Lead for Ophthalmology at Apellis Pharmaceuticals

Dawn Prall chats with Dr. Danny about the signs of Geographic Atrophy, also known as the advanced form of dry AMD. They discuss the science behind Geographic Atrophy, living with GA and a new drug, SYFOVRE® on the market for people to have Geographic Atrophy. Ask your doctor if it is right for you!

Danny Jones, PhD, joined Apellis three years ago to support the company’s research and development efforts in geographic atrophy secondary to age related macular degeneration. He has spent the last 11 years in the biotechnology and pharmaceutical industry, and his work has focused on neurological and retinal diseases like epilepsy, multiple sclerosis, and macular degeneration. In his most recent role before coming to Apellis, he led the launch of a new medication for patients with multiple sclerosis.

Danny holds a PhD in neuroscience from the University of California at San Francisco, and he completed a brief postdoctoral fellowship in the Department of Neurobiology at Duke University Medical Center, where he was awarded fellowships from the National Institutes of Health and the Epilepsy Foundation of America. His scientific research has been published in the Journal of Neurophysiology, the Proceedings of the National Academy of Sciences, and Science.

Danny resides just outside of Boston with his wife, four children, and a cat who’s always causing trouble. He’s an avid St. Louis Cardinals fan and spends as much time as he can on weekends playing pickleball in the street with his neighbors.

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In this episode…

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.

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