Foundation Fighting Blindness

Yes.

He mentions that his wife, he and his wife have been involved with the Foundation Fighting Blindness for several years.

They've served as co-chairs for the Cincy Northern Kentucky Vision Walk in 23 and 24.

And this year, his wife is back running it.

The Vision Walk is the biggest fundraiser of the year, and this is a personal one for this growl pal because he has a degenerative retinal disease that has caused significant vision loss for him.

He is legally blind and says his day-to-day experience with the world is very different than it used to be.

So the work that the Foundation Fighting Blindness is doing isn't just some charity that he happens to support.

It's quite literally about finding treatments and hopefully cures for people like him and the next generation of people who don't have to grow up wondering what their vision is going to look like

A secondary measure of central retinal sensitivity was also improved in the treated groups.

Quote, for people living with XLRP, this is the news we have been waiting years to hear, end quote, said Jason Menzo, Chief Executive Officer of the Foundation Fighting Blindness.

Quote, XLRP is a relentlessly progressive disease with no approved treatments.

This is the first pivotal study of a potential treatment for XLRP to achieve its primary endpoint with statistical significance.

But early on, like, you know, leaving a doctor's office, there's no pamphlet, there's no brochure, you know, there's no like chain list to say, hey, go ahead and call this family, you know, it's a local family.

So early on getting involved in the Foundation Fighting Blindness, they were really able to, help with those early conversations of, you know, what is this? And then a year later, when we got the genetic testing for my son, which is called choroideremia, it affects one in 50,000 boys and men.

They had their own Research Foundation, which is Quaterimia Research Foundation, the CRF, and that's been a huge help too.

So those individuals specifically have the same eye disease my son has.

It plans to start a phase three registrational trial for Stargardt disease and a phase two trial for geographic atrophy in 2026.

The Foundation Fighting Blindness has been funding optogenetic treatment strategies for retinal disease since the earliest stages of the technology's development.

To date, the Foundation has funded 15 optogenetic research projects totaling more than $4 million.

Learn more about retinitis pigmentosa, take a look at the latest in RP research advances, and explore the Foundation's clinical trial pipeline for other treatments for RP moving closer to patients.

He currently serves as a patient advocacy consultant, helping raise awareness of Alkius' international Phase 3 North Star clinical trial for Gilda retinal, an emerging oral therapy designed to slow the progression of Stargite disease.

Previously, he was VP of Science Communications at the Foundation Fighting Blindness.

He launched his consultant business in January 2026.

Ben has released three books, Retina Boy, Novel, Jerry's Vegan Woman, Short Stories, and The Vegan Monologues, Essays.

Welcome to Eye on the Cure, a podcast from the Foundation Fighting Blindness, providing science research, news, and insights about the world of vision and blinding diseases.

Welcome to Eye on the Cure.

I'm your host, Maddie Mossman, with the Foundation Fighting Blindness.

And we are already at our September episode.

Today and in all future episodes, I am going to learn alongside you.

Heather wears many hats.

She works for Community Solutions, a nonprofit dedicated to solving homelessness in large cities, where she has held multiple roles within the finance department.

She is also registered as a 200-hour yoga teacher and serves as president of the South Carolina chapter of the Foundation Fighting Blindness.