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‘Maybe We Can Have an Impact’: Philanthropic Gift Focuses on the Future of Inherited Retinal Disease Research

After being diagnosed with retinitis pigmentosa, Jim Reichert and his wife Anita have committed to donating a portion of their estate to CU ophthalmology researchers who investigate inherited retinal disease.

5 minute read

by Kara Mason | January 22, 2025
Jim, in a blue coat and jeans, poses for a photo with his wife Anita, in a teal jacket, on a hike near a high altitude lake in the Rocky Mountains.

When Jim Reichert gets an early start hiking a Colorado fourteener, he sometimes notices that the morning light peeking through the leaves appears a bit pixelated. It’s the only symptom he can currently tie to retinitis pigmentosa (RP), an inherited retinal disease that slowly leads to irreversible vision loss.

Eventually, Jim, who is in his mid-60s, may lose his sight completely, just as his father did. But he hopes future research will make a different outcome possible for others. Jim and his wife Anita have committed to donating a portion of their estate to ophthalmology investigators who focus on inherited retinal disease, including RP, at the Sue Anschutz-Rodgers Eye Center, where Jim is a patient.

“With the exception of RP, I think we’ve hit the lottery in life,” Jim says of himself and his wife. “We have good health and many other blessings. We have each other and family and friends who care about us. We’ve been able to live a comfortable life and travel. That combined with having no kids made us really think about what to do with our finances when we eventually pass.”

“This gift comes full circle for me,” he continues. “Inherited retinal diseases don’t get as much attention as some other areas in health research and there are so many variations, so it’s needed, and we have the means. Maybe we can have an impact.”

The bulk of the donation will likely happen decades from now, after the Reicherts die, but they’ve already started making monthly gifts to a fund that benefits the researchers now, hoping to kickstart discoveries that will help patients who share Jim’s diagnosis and others like it. The fund is also open to anybody else who wishes to donate.

Family ties

Jim Reichert was diagnosed with RP in 2018 after being tested for the disease following his father’s diagnosis. In RP, there's typically a genetic basis to the condition, although some patients may not have a family history. RP leads to the gradual degeneration of photoreceptors. Rods, specialized cells in the eye, that control night and peripheral vision typically degenerate first, followed by cones, which control central, color, and daytime vision.

RP affects about one in 2,500 to one in 4,000 people in the U.S., making it a common disease, although rare versions exist as well.

Inherited retinal diseases encompass a broad spectrum of degenerative conditions, explains retinal specialist Marc Mathias, MD, associate professor of ophthalmology at the University of Colorado School of Medicine. Jim is a patient of Mathias’s, as was Jim’s father.

“In Jim’s case, he has a dominant form of RP. That’s why it’s been passed along directly from one generation to the next, but there are other forms that can be inherited in different ways and impact some patients at a very young age and cause substantial vision loss,” Mathias says.

If it weren’t for the genetic test that confirmed RP and his father’s diagnosis, Jim says he’s not sure he’d suspect he has an inherited retinal disease. He experiences vision symptoms, like needing reading glasses, that are common among aging adults.

As time passes, symptoms may increase, and Jim’s peripheral vision will slowly disappear. With more advanced disease, he may lose his central vision as well.

There are overall no cures for RP and only one FDA-approved gene therapy treatment for a rare form of RP that affects 1-2% of patients.

“We’re working hard on research to try and find more treatments that may be able to preserve vision and even regenerate vision that patients have lost,” Mathias says.

That research is made possible in part by philanthropic donors like Jim and Anita Reichert, who say the Sue Anschutz-Rodgers Eye Center is an ideal place for their estate to support when the times comes.

“Seeing what the researchers are already doing at the eye center emboldens you to do more if you can,” Jim says.

Research needs present and future

For Mathias and other ophthalmology researchers who focus on inherited retinal diseases, the largest need is to find treatments that are effective.

“There’s been research done over many, many decades that have unfortunately not led to a substantial therapy that is truly able to limit or treat the disease,” he says.

In RP specifically, there are at least 100 genes that have been found to cause the disease. This presents a significant challenge to finding individual cures. Scientific investigators are looking at gene therapies as well as gene agnostic therapies, which don’t’ require knowing the genetic basis of the disease. This requires preserving or restoring rod and cone function and could have a broader application.

Current monthly donations from the Reicherts are already at work in the clinic, aiding the many needs medical staff and patients have.

“It is an exciting time to be in this field because we’re learning more and more,” Mathias says. “I’m grateful for the Reicherts and what they’re doing. These funds can help our mission and includes research projects, needs in the clinic, like providing genetic counselors, and added support for the patient population. It takes a team to help our patients, many of which want to maintain independence and navigate the world. The Reicherts are making a difference for our researchers, clinicians, and for fellow and future patients.”

To contribute to the Reichert Inherited Retina Disease Fund, please contact Michael Tortoro by email or phone: 303-724-7618.

Topics: Research, Genetics

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Marc Mathias, MD