Reaching for the Stars
At only three months old, Brendon was diagnosed with x-linked juvenile retinoschisis (XLRS). But with several other family members also with XLRS, Brendon knew he could still follow his passions for science and space. Now 22, Brendon is an Aerospace Engineer, starting a PhD program at UCF, and was recently awarded the prestigious National Science Foundation’s Graduate Research Fellowship.
Before Brendon Cavainolo was even born, his mom Lisa Pleasants was familiar with inherited retinal diseases, knowing she could potentially pass a retinal disease onto her future child. Lisa’s two brothers and cousin were diagnosed with x-linked juvenile retinoschisis (XLRS), so she saw first-hand how much it affected their lives.
At only three months old, Brendon had genetic testing and was diagnosed with XLRS. Once Brendon was old enough to communicate, a doctor determined he was legally blind.
“The day Brendon was diagnosed was one of the worst days of my life,” says his mom, Lisa. “I wanted to do everything in my power to make sure Brendon didn’t struggle in his life.”
At a young age, Brendon was fascinated with space and expressed interest in becoming a rocket scientist, so Lisa enrolled him in space camps during the summer. Brendon also had some powerful role models growing up, like his uncle, who was also affected by XLRS and was an electrical engineer for NAVAIR (Naval Air Systems Command).
In high school, Brendon continued to excel in math and stayed busy with extracurriculars like teaching himself and playing the guitar. For two years, Brendon was also a member of his high school’s cross-country team, developing a support system with his teammates, who offered him rides to and from practice.
“My diagnosis never made me feel that different growing up,” says Brendon. “It didn’t really hit me until high school when all my friends started getting their driver’s licenses; that’s the only time when I felt like I was left out.”
In college, at the University of Central Florida (UCF), Brendon joined a group called the Students for Exploration of Space, an engineering-based organization, and similarly, he built a support system with this group and was the treasurer for two years.
Now 22 years old, Brendon graduated with a bachelor’s degree in Aerospace Engineering from UCF in May 2021 and begins a PhD program in the fall of 2021.
Brendon also recently applied and was awarded the prestigious National Science Foundation’s Graduate Research Fellowship, which recognizes and supports outstanding graduate students by providing financial support for three years of graduate studies. Past fellows include numerous Nobel Prize winners, former U.S. Secretary of Energy, Steven Chu, Google founder Sergey Brin, and Freakonomics co-author Steven Levitt.
“Brendon has never let his diagnosis get in his way,” says Lisa. “Your child’s diagnosis doesn’t define them; in fact, I think it can help them become a stronger person and succeed even more.”
Regardless of Brendon’s outstanding accomplishments in his life so far, he and his mom have stayed informed on research and seek treatment options for his XLRS.
In fact, in 2015, Brendon began participating in a natural history study at Casey Eye Institute of Oregon Health & Science University in Portland, Oregon, thanks to a recommendation from Dr. Sandeep Grover at the University of Florida. The objective of this study, funded by the Foundation, was to evaluate subjects with XLRS in a clinical setting and gather data on disease progression. Brendon visited every six months for two years, each visit consisting of three-to-four-hour two-day testing performed, which looked at the natural history of his rare disease. The results of this study were used to design future gene therapy clinical trials.
When this two-year evaluation was complete, Brendon was 18 years old and became eligible for a clinical trial at Mass Eye and Ear. But in pre-enrollment, they discovered Brendon had a pressure issue in his eye, so he was not eligible to participate.
“I still have a lot of hope for technology, with the way the tech industry is advancing at a shockingly fast pace,” says Brendon. “I think technology is going to transform treatments for diseases like mine.”
To continue their search for treatment and remain optimistic, Brendon and Lisa connected with Dr. William Hauswirth at the University of Florida, who recommended they get involved with the Foundation Fighting Blindness. At that time, the Foundation’s Jacksonville Chapter and VisionWalk were just beginning to grow, and Lisa has been a vital member and contributor for the last 14 years.
“At Foundation events, I stuck Brendon in the spotlight at a young age, but it’s really helped him gain a lot of self-confidence,” says Lisa. “For many years, he’s been there to help the Foundation, but the Foundation has helped him grow quite a bit too.”
In an effort to raise as much money as possible to accelerate research, Lisa also founded MOMS for Sight in 2012. The organization started with hosting their Black Ties & Blindfolds annual fundraising gala, but it blossomed into a support group for local moms as well.
“It’s the moms of children who are newly diagnosed that are desperate for advice, so our group is there for guidance,” says Lisa. “We’re here to let you know you’re not alone and that there is so much hope for the future.”
Through Brendon’s adversity and an abundance of hard work to get to where he is today, he’s learned that having a community is essential to living a happy and successful life.
“In going through any type of vision loss, it’s important to keep an open mind and make lots of friends,” says Brendon. “Developing a support system has been so helpful in my journey with vision loss, but you also have to be your own advocate, so learn how to stand up for yourself as well.”