Nov 10, 2023

Eye on the Cure Podcast

Foundation Podcasts

The Eye on the Cure Podcast from the Foundation Fighting Blindness provides science information, news, and insights from the world of vision and retinal diseases. The podcasts are hosted by Ben Shaberman, vice president, science communications, and often include conversations with guests from the research and vision communities.

To learn more about our podcasts and which platforms they are available to stream, visit the Foundation Podcasts page. If you would like to download any of the episode transcripts, please visit the Eye on the Cure Podcast transcript page.

Episode 62: Dr. Peter Quinn

February 23, 2024. Peter Quinn, PhD, a principal investigator and associate research scientist at Columbia University, talks to host Ben Shaberman about the promise of emerging CRISPR/Cas9 gene editing therapies, including base and prime editing approaches, for inherited retinal diseases. Dr. Quinn also reviews gene editing projects ongoing in his lab for patients with mutations in CRB1 and PRPH2.


Episode 61: Dr. Jose Sahel

February 02, 2024. Dr. Jose Sahel, one of the most honored and accomplished leaders in the retinal disease research space, talks with host Ben Shaberman about his establishment and leadership of renowned ophthalmology clinical research centers at the University of Pittsburgh Medical Center and Institut de la Vision in Paris. They also discuss emerging inherited retinal disease therapies from SparingVision, a biotech co-founded by Dr. Sahel. 


Episode 60: Justin Kauflin

January 19, 2024. Justin Kauflin, a renowned jazz pianist who lost his vision as a boy, talks to host Ben Shaberman about his extensive touring, numerous collaborations, and close friendship with legendary trumpeter Clark Terry. Their story was captured in the hit documentary film Keep On Keepin' On. Justin became a jazz pro at the age of 14, toured globally with Quincy Jones, and was voted jazz artist of the year by VEER magazine.

 

Episode 59: Dr. Robert MacLaren

January 5, 2024. Dr. Robert MacLaren, a world-renowned retinal surgeon, clinical trial investigator, and research lab leader at the University of Oxford, talks to host Ben Shaberman about the successes and challenges in retinal gene therapy development and clinical trials, as well as advances in robotics for improving retinal surgery outcomes.  

 

Episode 58: Jason Comander, Md, PhD

December 15, 2023. Jason Comander, Md, PhD, clinical researcher, surgeon, and director of the Inherited Retinal Disease Disorders Service at Mass Eye and Ear, talks to host Ben Shaberman about his administration of LUXTURNA gene therapy to RPE65 patients, his team's re-analysis of vitamin A therapy for retinitis pigmentosa, and passion for retinal research and patient care.

 

Episode 57: James Rath

December 1, 2023. James Rath, a renowned filmmaker and accessibility consultant, talks to host Ben Shaberman about his vision loss journey and travel documentary, Blindspots. The new streaming program, on CuriosityStream.com, follows James as he explores the globe in search of accessible adventures, remarkable blind personalities, and great food.

 

Episode 56: Michael Voevodsky, MBA, CEO

November 10, 2023. Michael Voevodsky, MBA, CEO at  MitoChem Therapeutics, talks to host Ben Shaberman about his company's emerging, gene-agnostic treatment designed to boost mitochondrial function for preserving vision in people with retinitis pigmentosa, age-related macular degeneration, and other retinal conditions. 

 

 

Episode 55: Omar Mahroo, MB, PhD

October 13, 2023. Omar Mahroo, MB, PhD, talks with host Ben Shaberman about electrophysiological testing for the retina, namely the electroretinogram (ERG), and its important role in evaluating and diagnosing inherited retinal diseases. Dr. Mahroo is a consultant ophthalmologist and retinal specialist at Moorfields Eye Hospital and St. Thomas’ Hospital in London, and Professor of Retinal Neuroscience at University College London.

 

Episode 54: Rachelle Lin, OD, MS, FAAO

September 29, 2023. Rachelle Lin, OD, MS, FAAO, an optometrist and assistant professor at the Southern California College of Optometry at Marshall B. Ketchum University, talks with host Ben Shaberman about the critical role of optometrists in providing care and low-vision resources for patients with inherited retinal diseases and other eye conditions. 

 

Episode 53: David Birch, PhD

September 15, 2023. David Birch, PhD, at the Retina Foundation of the Southwest in Dallas, talks to host Ben Shaberman about his productive and impactful 40-plus-year career as a retinal disease researcher and clinical trial investigator. Dr. Birch also discusses the challenges and opportunities for advancing more therapies through trials and out to the people who need them.

 

Episode 52: Brendan Creemer

September 1, 2023. Brendan Creemer talks to host Ben Shaberman about how he is taking on the diagnosis of Usher syndrome 1F by dedicating his education and career to becoming a researcher for retinal disease treatments and cures.

 

Episode 51: Artur Cideciyan, PhD

August 18, 2023. Artur Cideciyan, PhD, one of the world’s foremost authorities in measuring vision and structural changes in people with retinal diseases, talks with host Ben Shaberman about current imaging tools, functional tests, and his experience as an investigator in several prominent clinical trials at the University of Pennsylvania, Scheie Eye Institute.

 

Episode 50: Rachel Huckfeldt, MD, PhD

July 21, 2023. Rachel Huckfeldt, MD, PhD, a clinical researcher and assistant professor of ophthalmology at Mass Eye and Ear, talks with host Ben Shaberman about caring for patients with inherited retinal diseases (IRD), the challenges and opportunities with clinical trials, and the educational and professional journey that led her to the IRD research field.

 

Episode 49: Alex Cohen, PhD

June 30, 2023. Alex Cohen, PhD, a marketing professor with retinitis pigmentosa, talks with host Ben Shaberman about his career in the hospitality industry and launch of Accessible Pharmacy, a comprehensive pharmacy service for people with vision loss.

 

Episode 48: Jami Kern, PhD

June 16, 2023. Jami Kern, PhD, chief clinical officer at Nacuity Pharmaceuticals, talks with host Ben Shaberman about NACA, the company's emerging gene-agnostic therapy for Usher syndrome and retinitis pigmentosa in a Phase 2 clinical trial in Australia. Their conversation includes a discussion about oxidative stress, which NACA is designed to mitigate, and timing for the efficacy readout from the Phase 2 study.

 

Episode 47: Kari Branham

June 2, 2023. Kari Branham, a genetic counselor with Kellog Eye Center at the University of Michigan, talks to host Ben Shaberman about a variety of topics related to genetic testing and counseling for people with inherited retinal diseases. Their conversation includes discussion of: common misconceptions about genetic testing, variants of unknown significance, when re-testing makes sense, and when and if family members should be tested.

 

Episode 46: Aaron Osborne, MD

May 19, 2023. Aaron Osborne, MD, chief medical officer and chief development officer at Nanoscope Therapeutics, talks about vision restoration in clinical trials of the company's optogenetic therapy for people with advanced vision loss from retinitis pigmentosa and Stargardt disease.

 

Episode 45: Henry Klassen, MD, PhD

April 28, 2023. Henry Klassen, MD, PhD, co-founder of jCyte and clinical researcher at UC Irvine, talks to host Ben Shaberman about jCyte's clinical trial results and future plans for developing its cell-based therapy for preserving vision caused by retinitis pigmentosa, Usher syndrome, and related retinal conditions.

 

Episode 44: Jason Taylor

April 14, 2023. Electronica musician and composer Jason Taylor, aka Aether, talks with podcast host Ben Shaberman about his craft, inspirations, and how vision loss from retinitis pigmentosa has influenced his work. Jason's ambient, ethereal music has been featured in a variety of popular video games including: viewfinder, mythwrecked: ambrosia island, Rocket League, and Kingdoms and Castles. He has a new EP out called Moonstone. Learn more at aetheraudio.co.uk and @atheraudio.

 

Episode 43: Marinna Madrid, PhD

March 31, 2023. Marinna Madrid, PhD, co-founder and chief product officer at Cellino, talks about her groundbreaking work in developing lasers as a doctoral student and her company’s innovative approach for manufacturing personalized cell-based therapies including those for retinal diseases.

 

Episode 42: Paul Bresge

March 10, 2023. Paul Bresge, chief executive officer at Ray Therapeutics, talks to host Ben Shaberman about his company’s emerging optogenetic therapy for restoring vision to people with advanced forms of retinitis pigmentosa (RP), Stargardt disease, and geographic atrophy (advanced dry age-related macular degeneration). Paul also reflects on his prior role as chief executive officer at jCyte and how the diagnosis of RP for his daughter changed the trajectory of his career.

 

Episode 41: Dean Bok, PhD

February 24, 2023. Dean Bok, PhD, a distinguished professor and renowned researcher at UCLA, talks with host Ben Shaberman about his pivotal discovery in the late 1960s of the daily renewal process for photoreceptors in the retina and other early, groundbreaking discoveries about retinal diseases that laid a foundation for therapy development for years to come.

 

Episode 40: Rebecca Alexander

February 10, 2023. Rebecca Alexander — a psychotherapist, keynote speaker, author, fitness instructor, and disability rights advocate — talks candidly with host Ben Shaberman about her journey with Usher syndrome. Reflecting on her own experiences, she discusses how people with vision loss and their loved ones can practice good emotional care and advocate for their needs.

 

Episode 39: Paul Bernstein, MD, PhD

January 20, 2023. Paul Bernstein, MD, PhD, from the Moran Eye Center, University of Utah, and a member of the Foundation’s Scientific Advisory Board talks to host Ben Shaberman about his clinical practice for retinal disease patients, his early research into vitamin A metabolism in the retina, and nutrition for people with retinal conditions such as retinitis pigmentosa and Stargardt disease.

 

Episode 38: Ben Shaberman

January 6, 2023. For the first Eye on the Cure episode for 2023, host Ben Shaberman highlights some of the promising clinical advancement made in therapy development over the last year. His recap includes discussions of emerging treatments from: SparingVision, Atsena Therapeutics, Alkeus, Belite, Apellis, Iveric Bio, MeiraGTx, AGTC, 4DMT, and Opus Genetics, which, after the recording of the episode, reported its acquisition of rights to gene therapies for Best disease and RP (RHO).

 

Episode 37: Rando Allikmets, PhD

December 16, 2022. Rando Allikmets, PhD, from Columbia University, talks to host Ben Shaberman about his remarkable and serendipitous discovery more than two decades ago of ABCA4, the gene associated with Stargardt disease. The breakthrough changed the trajectory of his career, changed the landscape of Stargardt disease research, and led to the development of gene therapies and visual cycle modulators.

 

Episode 36: Sue Bramhall

December 2, 2022. Host Ben Shaberman interviews Sue Bramhall who launched Mind's Eye Travel to host journeys around the world for people with vision loss. Affected with RP, Sue channels her passion for travel and planning to organize group adventures that include great eating, tactile experiences, and other non-visual experiences for her guests. Sighted guides also join the excursions to help along the way. Upcoming trips include Europe, Africa, and New Zealand. Learn more at www.MindsEyeTravel.com.

 

Episode 35: Kenji Fujita, MD

November 18, 2022. Kenji Fujita, MD, chief medical officer at Atsena Therapeutics, talks to host Ben Shaberman about retinal disease gene therapies including positive results from his company's gene therapy clinical trial for people with Leber congenital amaurosis 1 (GUCY2D mutations) as well as Atsena's emerging gene therapies for X-linked retinoschisis and Usher syndrome type 1B.

 

Episode 34: LambdaVision

November 4, 2022. In this episode of Eye on the Cure, host Ben Shaberman talks with LambdaVision's Nicole Wagner, PhD, and Jordan Greco, PhD, about the company's emerging protein-based artificial retina, the promise it holds for restoring vision, and the low-gravity, manufacturing experiments that have been conducted at the International Space Station.

 

Episode 33: Jacque Duncan, MD

October 7, 2022. Podcast host Ben Shaberman talks with Jacque Duncan, MD, a retinal specialist and clinical researcher at UCSF and chair of the Foundation's Scientific Advisory Board (SAB), about her work with adaptive optics for hi-resolution imaging of the retina, her challenging but rewarding role on the SAB, and how the research pipeline enables her to convey hope to all patients and families affected by inherited retinal diseases.

 

Episode 32: Dr. Sandy Greenberg

September 23, 2022. Dr. Sandy Greenberg talks to host Ben Shaberman about his incredible life's journey of going blind suddenly at the age of 19 to earning advanced degrees from Columbia and Harvard, receiving a White House Fellowship, serving on the Council of Foreign Relations, and founding the company which developed the computer system for the lunar excursion module that transported the first men to the moon. His compelling memoir, "Hello Darkness, My Old Friend," reflects on these and many other accomplishments as well as his lifelong friendship with Art Garfunkel. Dr. Greenberg and his wife, Sue, launched the Campaign to End Blindness to generously fund vision-restoring research.

 

Episode 31: Jean Bousquet

September 9, 2022. Jean Bousquet, a certified orientation and mobility specialist with the Office of Rehabilitation Services in Rhode Island, talks to podcast host Ben Shaberman about navigational canes, guide dogs, phone apps, and many other orientation and mobility resources for people with low vision.

 

Episode 30: Steven McCoy

August 19, 2022. Host Ben Shaberman talks with Steven McCoy, who overcame early challenges as a kid with Usher syndrome, to become the first black, deaf-blind journalist. Steven found his way forward through an impressive career with Disney and his own projects including his "Sessions with Steven" podcast and forthcoming memoir and television film about his remarkable personal journey.

 

Episode 29: David Gamm, MD, PhD

August 5, 2022. Stem cell expert David Gamm, MD, PhD, talks with host Ben Shaberman about his innovative work in stem cell therapy development for retinal diseases, including his research at the University of Wisconsin-Madison and the company Opsis, which he co-founded. Their conversation covers a variety of topics including induced pluripotent stem cells, the benefits of scaffolds for cell orientation in the retina, and scale-up manufacturing.

 

Episode 28: Brian Strem, PhD

July 22, 2022. Brian Strem, PhD, CEO of Kiora Pharmaceuticals, talks to Ben Shaberman about his company's emerging gene-agnostic small molecule for restoring vision for people with advanced retinitis pigmentosa and potentially other retinal diseases. Kiora recently received authorization in Australia to launch a trial for the treatment.

 

Episode 27: Jeff Stern and Sally Temple

July 8, 2022. Jeff Stern, MD, PhD, and Sally Temple, PhD, co-founders of the Neural Stem Cell Institute, talk with host Ben Shaberman about their discovery of stem cells in the human retinal pigment epithelium and their newly launched clinical trial for the cells in people with dry age-related macular degeneration.

 

Episode 26: Rachel Wong, PhD

June 25, 2022. Rachel Wong, PhD, professor and chair of the Department of Biological Structure at the University of Washington in Seattle, discusses the beauty and complexity of retinal circuitry and why the work in her lab is so important to the advancement of treatments and cures for people with inherited retinal diseases. Dr. Wong delivered the prestigious Friedenwald Award Lecture at the 2022 annual meeting of the Association for Research in Vision and Ophthalmology (ARVO).

 

Episode 25: Frank Bruni

June 10, 2022. Frank Bruni, a popular NY Times columnist, book author, and Duke journalism professor, talks with host Ben Shaberman about his eclectic career, journey with vision loss, and latest book, "The Beauty of Dusk."

 

Episode 24: Ash Jayagopal, PhD

May 6, 2022. Host Ben Shaberman talks with Ash Jayagopal, chief scientific officer at Opus Genetics, a company launched by the Foundation Fighting Blindness to advance gene therapies for inherited retinal diseases into clinical trials. The company is targeting rare retinal conditions, including forms of Leber congenital amaurosis, that aren't being addressed by other companies.

 

Episode 23: John Flannery, PhD

April 22, 2022. John Flannery, PhD, a renowned gene therapy researcher from UC Berkeley and co-founder of Vedere Bio, talks with host, Ben Shaberman, about the promise of optogenetics, a gene-agnostic approach for restoring vision for people with advanced retinal diseases.

 

Episode 22: Judge David Tatel

April 8, 2022. Host Ben Shaberman chats with Judge David Tatel, who, since 1994, has served on the US Court of Appeals — DC Circuit. He was appointed to the court by President Bill Clinton when Ruth Bader Ginsburg was appointed to the Supreme Court. During the podcast interview, David reflects on his impressive career, his adjustments to vision loss from XLRP, and his beloved guide dog, Vixen.

 

Episode 21: Katriona Taylor

March 25, 2022. Jazz singer Katriona Taylor talks with host Ben Shaberman about her journey with Stargardt disease and her new album, Blind Passion, which includes covers of songs from iconic singers such as Stevie Wonder, Ray Charles, and Diane Schuur. Katriona also shares a performance of her original song "In the Name of Love."

 

Episode 20: Dr. Nancy Holekamp

March 11, 2022. Dr. Nancy Holekamp, a retinal specialist, clinical trial investigator, and key opinion leader in the retinal disease space, discusses new therapies and research for wet and dry age-related macular degeneration and some emerging treatment approaches for inherited retinal diseases. This episode is sponsored by Apellis Pharmaceuticals.

 

Episode 19: Nieraj Jain, MD

February 25, 2022. Ben Shaberman talks with Nieraj Jain, MD, a retinal surgeon and expert in inherited retinal diseases from Emory on a wide range of clinical topics including retinal surgeries, vitamin A for IRD patients, cataract surgery for IRD patients, and his role in the Phase 3 XLRP gene therapy clinical trial being conducted by MeiraGTx/Janssen.

 

Episode 18: Michael Stone

February 11, 2022. Ben Shaberman talks with Michael Stone, a 17-time Ironman triathlete, about the adventures and challenges of being a prolific athlete with vision loss and a really fast guide dog.

 

Episode 17: Tom Reh, PhD

January 28, 2022. Eye on the Cure host, Ben Shaberman, talks with world-renowned researcher Tom Reh, PhD, who is developing an approach to enable the degenerating retina to regenerate its own new photoreceptors.

 

Episode 16: Ben Mehl

January 14, 2022. Podcast host, Ben Shaberman, has a fun chat with Ben Mehl, an actor with Stargardt disease who plays a completely blind librarian on the hit Netflix series "You."

 

Episode 15: Gordon Gund

December 10, 2021. Gordon Gund, co-founder and chairman emeritus of the Foundation, joins host Ben Shaberman to share reflections on 50 years of fighting blindness and what has made the Foundation successful in driving its mission to eradicate the entire spectrum of retinal degenerative diseases.

 

Episode 14: Michael Kalberer

November 19, 2021. Michael Kalberer talks with Ben Shaberman about his perspective on living with cerebral palsy and Leber congenital amaurosis as well as his vision improvements after receiving an emerging CRISPR/Cas9 treatment in Editas' BRILLIANCE clinical trial.

 

Episode 13: Dave Knop, PhD

November 5, 2021. Ben Shaberman talks with Dave Knop, PhD, vice president of process development at AGTC, about how emerging gene therapies for inherited retinal diseases are manufactured for use in human studies.

 

Episode 12: Michael Young, PhD

October 22, 2021. Michael Young, PhD, from Harvard Medical School, joins host Ben Shaberman to talk about the latest in stem cell research for retinal diseases.

 

Episode 11: Silvia Sorensen, PhD

October 8, 2021. Silvia Sorensen, PhD, an associate professor at the University of Rochester in the Center for Community Health and Prevention, talks with host Ben Shaberman about mental health issues and management for people with low vision.

 

Episode 10: Dr. Naveed Shams, ProQR

September 24, 2021. Dr. Naveed Shams, chief scientific officer at ProQR, discusses RNA therapies and ProQR's three clinical trials targeting: Leber congenital amaurosis (a CEP290 mutation), USH2A exon 13, and retinitis pigmentosa (RHO-P23H).

 

Episode 9: Stephen Daiger, PhD

September 10, 2021. Stephen Daiger, PhD, Director of the Laboratory for Molecular Diagnosis of Inherited Eye Diseases at UT Houston, discusses the challenges and advancements in identifying the genetic mutations that cause retinal degenerative diseases.

 

Episode 8: Ben Shaberman, Genetic Testing

August 27, 2021. Host Ben Shaberman provides an overview of the Foundation's no-cost genetic testing program for people in the U.S. with inherited retinal diseases.

 

Episode 7: Bonnie Swenor, MPH, PhD

August 13, 2021. Host Ben Shaberman talks with Bonnie Swenor, MPH, PhD, Director of the Johns Hopkins Disability Health Research Center, about her journey from the sudden, unexpected onset of vision loss to becoming a researcher and advocate for people with all disabilities.

 

Episode 6: Drs. Troyk and Lane

July 30, 2021. Ben Shaberman interviews Drs. Philip Troyk and Frank Lane of the Illinois Institute of Technology about their clinical trial for the Intracortical Vision Prosthesis, a pioneering system for restoring vision to people who are completely blind.

 

Episode 5: Morten Bonde

July 16, 2021. Ben Shaberman chats with Morten Bonde, senior art director at Lego Group in Copenhagen and author of the book "Sentenced to Blindness — Now What?"

 

Episode 4: Jill Dolgin, AGTC

July 2, 2021. Jill Dolgin, the executive director of patient advocacy at AGTC, talks to Ben about her role in helping patients understand clinical research. They also discuss AGTC's current gene therapy clinical trials for X-linked retinitis pigmentosa and achromatopsia.

 

Episode 3: Dr. Daniel Chung

June 18, 2021. Host Ben Shaberman interviews Dr. Daniel Chung, chief medical officer at SparingVision, which is developing a gene-agnostic therapy to preserve cone vision in people with retinitis pigmentosa, Usher syndrome, and related conditions. A clinical trial launch for the emerging treatment, known as SPVN06, is planned for late 2021 or early 2022.

 

Episode 2: Sheila Nirenberg, PhD

May 28, 2021. Sheila Nirenberg, PhD, a professor at Cornell and founder at Bionic Sight talks with Ben Shaberman about her company's innovative optogenetic therapy which provides hope for vision restoration for people with advanced vision loss from retinal diseases. The approach has shown encouraging results in an early stage clinical trial.

 

Episode 1: Welcome

May 14, 2021. In the inaugural Eye on the Cure podcast, host Ben Shaberman explains why the retina is such a great target for therapy development and also provides some updates from the clinical trial frontlines.