Foundation Fighting Blindness

Achromatopsia, Choroideremia, Blue Cone Monochromacy, Cone-rod Dystrophy and X-linked Retinoschisis. Speakers: Christine Kay, MD and Robert Hufnagel, MD, PhD

Speakers: Rachel Huckfeldt, MD, PhD and Jami Kern

Speakers: Astra Dinculescu, PhD and Jacque Duncan, MD

Speaker: Dana Aravich MS, OTR/L

Speakers: Justin Bishop and Becca Meyers

Speaker: Rusty Kelley, PhD, MBA

Speaker: Mandeep Singh, MD, PhD

Speakers: Alina Dumitrescu, MD, Erin O'Neil, MD and Peter Quinn, PhD

June 24, 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...

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."

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.

Alkeus Pharmaceuticals reported that its emerging treatment for Stargardt disease slowed the growth of retinal atrophy – i.e., the area of damage to the retina – by approximately 30 percent per year for patients in its Phase 2 TEASE clinical trial at seven clinical research centers in the US.

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.

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.

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."

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.

February 25, 2022. Host 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.

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.

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.

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."

The clinical trial is for RHO and NR2E3 mutations, but the retinal gene therapy has the potential to benefit people with a variety of other mutated genes.

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.

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. Michael can be reached at michaeljkalberer@gmail.com. His website is at michaeljkalbererpresents.com.

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.

The US Food & Drug Administration (FDA) has approved Susvimo, Genentech’s port delivery system (PDS) with ranibizumab, for the treatment of wet age-related macular degeneration (AMD). The PDS, a refillable capsule the size of a rice grain, provides continual release of ranibizumab, a protein that blocks the growth of vision-robbing, leaky blood vessels which are the hallmark of wet AMD. The PDS is...