Biologist and Father Dedicated to Daughter’s Cure
After Allison’s diagnosis with Usher syndrome type 3, her dad, Jeff Libby, wanted to do everything he could to find her a cure. As a biologist, Jeff started searching for organizations researching blinding diseases like Allison’s, and he found the Foundation Fighting Blindness.
Allison was 13 years old when she was diagnosed with Usher syndrome. Her parents, Jeff and Bonnie Libby, took her for a routine eye examination, and the doctor then sent her to a specialist at Stanford University who confirmed she had Usher syndrome type 3, caused by mutations in the CLRN1 gene.
Thinking back on a family trip to Squaw Valley when Allison was only nine years old, Jeff recalls watching meteor showers on a ridge one night and Allison saying she couldn’t see anything.
“At the time, I thought she was just being obtuse,” Jeff recalls. “But looking back, now I realize she really couldn’t see anything out of the corner of her eyes. That was the first time I noticed something off with her vision.”
Jeff was a microbiologist and a molecular biologist, working with three startup biotech companies in Silicon Valley over his career. So when Allison was first diagnosed, Jeff had heard about Usher syndrome in his studies but had never thought about it personally affecting him and his family. Jeff tried to do his own research, but in 1997, there wasn’t much to be found online about blinding retinal diseases like Usher syndrome. Eventually, Jeff came across the Foundation Fighting Blindness online, and in 1999, Jeff and Bonnie attended their first Foundation event in Napa Valley and met other families and individuals affected by blinding diseases.
“As a molecular biologist, I’ve ended up learning a lot about the genetics of vision disorders,” says Jeff. “And as a dad, I wanted to use my biology background to help inform other people about diseases like Usher syndrome.”
Jeff became the Bay Area Chapter President for the Foundation Fighting Blindness for many years. He recently stepped down from the role, but their entire family has participated in the Bay Area VisionWalk for over ten years as team “Eyes on the Future” and are usually one of the top fundraising teams. This year, their VisionWalk team has raised over $34,600.
“Being a medical researcher my whole life, raising funds is important to my family and me, so I’m delighted that the Foundation is in existence,” says Jeff. “It’s a good time to be involved in research and the Foundation. We need a thousand Foundation’s and more funds to find treatments for everyone.”
So far, Allison’s vision loss progression has been slowly diminishing, and she recently started wearing hearing aids. Allison is now in her mid-30s, married to her husband Casey, with one-year-old identical twins, Sadie and Camille. Allison is currently a practicing clinical psychologist after attending UCLA for her undergraduate degree in psychology and then earning her doctor of psychology degree from a program of the Pacific Graduate School of Psychology and Stanford University, the PGSP-Stanford PsyD Consortium. In her spare time, Allison and her sister Becky enjoy running half marathons.
“Allison has always been a trooper from the moment she was diagnosed,” says Jeff. “She’s rarely done anything different than any other person who isn’t affected by a retinal disease. She’s always been so steady, and is super smart, dedicated, and has an amazing work ethic.”
When Allison was diagnosed with Usher syndrome in 1997, Jeff recalls the doctor telling them there was nothing they could do for her now, but maybe in five years, there will be something. So as a father, all Jeff could do was get involved with organizations like the Foundation and keep working toward a solution.
“I’m extremely proud of Allison and both my daughters, really,” says Jeff. “They succeed because of their work ethic first and their smarts second. To see all of Allison’s success all on her own has been rewarding. As a parent, all you can provide is love and support.”
Jeff is just one example of how fathers will go above and beyond to raise, love, and support their children. Happy Father’s Day from the Foundation Fighting Blindness!