Feb 5, 2024

Foundation’s Reach Inspires Partnership for Nixon Family

Beacon Stories

After Janine’s diagnosis of an IRD caused by a mutation of the PRPH2 gene, she and her husband set out to learn and help all they could. So they started working with the Foundation Fighting Blindness and have launched the ‘PRPH2 and Associated Retinal Degenerations Program.’

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Janine Nixon spent more than 15 years wondering about the “disturbances” in the vision in her left eye.

“My optometrist sent me to a retinal doctor who found that I had a spot on each of my retinas,” she says. “But he didn’t think it was anything serious and told me not to worry about it.”

The Nixon Family: Janine, Brandon, and their two children, Cameron and Corinne.

Janine’s vision loss was so gradual that she just lived with it. That is, until 2020, when one day, she realized she’d lost most of the central vision in her left eye. A new doctor opted to do genetic testing, which pointed to an inherited retinal disease (IRD) caused by a mutation of the PRPH2 gene.

She and her husband, Brandon, set out to learn everything they could about PRPH2-related diseases. But now, they no longer had to wonder because simple online searches provided them with plenty of information. And a lot of it was connected by a common thread.

“One of the things we noticed as we were doing our research was that the Foundation Fighting Blindness kept coming up—as a funder of research, as a sponsor of research,” Janine said. “We were like, ‘Wow. The Foundation seems to be the place to go.’”

But the Foundation did more than provide information. For the Nixons, who had recently formed a family foundation for various philanthropic efforts, the Foundation Fighting Blindness became an essential partner.

“Each one of the paths we would go down, we would ultimately get to where the Foundation was involved in it somewhere,” Brandon said. “That’s when we reached out to them to help us figure out the best path for our efforts.”

With guidance from and collaboration with the Foundation, the ‘PRPH2 and Associated Retinal Degenerations Program’ was born. The program kicked off with the in-person ‘PRPH2 and Associated Retinal Diseases Workshop,’ hosted in partnership with the Foundation and Shiley Eye Institute at the University of California, San Diego, held in late March of 2023.

“There have been lots of conferences centered around diseases or phenotypes,” Brandon said. “This was the first conference focused just on the gene-PRPH2. And the Foundation was just fantastic. Their resources were absolutely critical in designing and populating the conference with world-class people. It was incredible. It was emotional. It was hopeful. And it was interesting.”

Among IRD patients, mutations of PRPH2 are relatively common, but they can cause more than one disease. With any disease, particularly ones that are misunderstood, it’s easy to feel like you’re the only one who has it. Both Brandon and Janine said it was exciting to be with people with similar conditions and to meet researchers and doctors working on treatments and cures for those conditions.

“There were breakouts where attendees got to mingle with each other and get to know each other,” Janine said. “They might have been familiar with someone’s work, but now they were meeting them in person. And patients were there, and they got to meet these people who are working on this gene and on these diseases. And those patients got to meet other people going through the same thing they are going through. It was really meaningful for the patients.”

The workshop is just the beginning of the program the Nixons have planned with the Foundation. In partnership, the two entities have issued requests for proposals from labs around the world to fill some of the gaps in understanding PRPH2 and have received almost 30 responses.

“The idea is that we would pick two labs each year for the next three years and give them multi-year grants,” Brandon says. “But there’s so much good stuff coming to us that we don’t exactly know the pace of the funding we’re going to do.”

In addition to the ongoing partnership, the Nixons have made significant gifts to the Foundation and do not hesitate to encourage other people to do the same.

“We feel that the Foundation has just got the pulse of what’s going on in the world of inherited retinal diseases,” Janine said. “And they’re a really great partner for figuring out how to most effectively direct your funds with confidence.”