Growing up with severe hemophilia A in the 1970s and ’80s, Jason Fulton never let his diagnosis get in the way of living his life to the fullest. An avid sports fan who wore ankle braces so he could ski and play tennis and basketball, he viewed his hemophilia as a rival to be beaten, and he did everything he could to achieve his goals.
“Jason was a born leader who rose to the occasion, on every occasion, and demonstrated great problem-solving skills,” says his mother, Karen Fulton Holine. “He was very focused on what he could do with his life rather than on his limitations. He also had the best sense of humor. His joy was contagious.”
Even after learning, at age 17, that blood products he had taken to treat his hemophilia had infected him with HIV, Jason kept pursuing his dreams. He attended Fresno State University, where he studied pre-pharmacology while also coaching athletes with disabilities and mentoring children with hemophilia.
He also fell in love, got married and bought a house before his death in 1995 at age 24 of complications from the HIV infection. Jason died just before graduating from college, but he was awarded a degree posthumously in 1998, when Fulton Holine and the science department chair petitioned the president of the university after a transcript review showed that Jason had already completed the necessary credits.
“Jason fulfilled a lot of life goals that people twice his age today still struggle to fulfill,” says his mother, who has established a scholarship in her son’s name to benefit the National Hemophilia Foundation’s (NHF) National Youth Leadership Institute, a two-year program designed to assist young people from the bleeding disorders community in becoming well-trained, recognized leaders.
Friends Became Family
“From the moment Jason walked into our lives as an adorable 13-year-old with his crinkly-eyed smile, Ron and I just loved him,” says Leah Ogden Adams, Fulton Holine’s close friend, who has been very involved in establishing the scholarship fund.
Ron Adams is Leah’s husband. Back in 1984, when they first met Jason, Ron was an assistant coach for the Fresno State men’s basketball team, and Leah was its academic adviser. (Ron is now an assistant coach for the Golden State Warriors.)
A few years before, Fulton Holine and several other parents had formed a local NHF chapter that advocated for a pediatric hematologist who could serve in a satellite treatment center. That resulted in a monthly clinic being held at Valley Children’s Hospital of Fresno, saving the families countless hours of unnecessary travel to Los Angeles for treatment.
Knowing of Jason’s love of basketball, his social worker from the satellite clinic introduced Jason to Ron and asked if there was something the young man might be able to do for the summer basketball camp. The couple invited Jason to help, and they were so impressed with his work ethic and commitment to the players that they named him an honorary manager of the team when he was in high school.
“We marveled at how Jason coped with all that life had thrown at him, and we learned as much or more from him as he did from us,” Ogden Adams says. “His dedication inspired all of us, but especially the players, who quickly befriended him.”
Reconnection Sparks an Idea
Fulton Holine had been an active volunteer with NHF for many years, but after Jason died, she needed to step back. She reconnected with NHF in 2016, around the time that the National AIDS Memorial Grove in San Francisco’s Golden Gate Park announced plans to honor the thousands of people in the hemophilia community who had been affected by HIV and AIDS by establishing the Hemophilia Memorial at The Grove. In 2017, Fulton Holine and her family had Jason’s name engraved in both the National AIDS Memorial Grove Circle of Friends and the Hemophilia Memorial.
It was also around that time that she and Ogden Adams started talking about how they could honor Jason’s life and help other young people with hemophilia realize their dreams. Working with NHF, the friends began raising money for the Jason Fulton Memorial Leadership Fund in 2019. The pandemic has slowed down their plans a bit, but they’re nearly halfway to their $100,000 goal.
“Jason’s perseverance was phenomenal, and he still inspires not just me but so many others,” says his mother. “I’m grateful for a chance to create a legacy in his name, allowing his story to continue to inspire and benefit future generations of leaders long after I’m gone.”
Donate to the Jason Fulton Memorial Leadership Fund at hemophilia.org/jasonfultonfund.