Scholarship Pays Tribute to the Legacy of Late Patient Jason Fulton
Jason Fulton was accepted to the University of the Pacific in Stockton, California, to pursue a graduate degree in pharmacology and help hemophilia patients like himself. But the 22-year-old knew then he likely would not achieve his dream.
At 17, he learned the blood he was receiving to treat severe hemophilia A was tainted with the human immunodeficiency virus (HIV), which led to an AIDS diagnosis. He knew his days were numbered. He died from the disease in 1995 at the age of 24.
However, the sobering diagnosis didn’t stop him from continuing to advocate for better treatments and access for hemophilia patients, and helping his mother, Karen Fulton Holine, who worked with International Wheelchair Tennis and the 1988 Special Olympics, coach disabled athletes.
He lived a full life in those 24 years — he finished enough credits for his undergraduate degree at Fresno State, bought a house, and married.
The National Hemophilia Foundation (NHF) now is honoring his legacy with the Jason Fulton Memorial Scholarship, which benefits other young people with hemophilia who share Fulton’s leadership characteristics and passion to help the hemophilia community.
“We wanted to utilize it to inspire the next generation of leaders in the inheritable bleeding and blood disorder community and finding young adults who really captured the spirit of Jason,” said James Uyeda, director of development for the NHF, in an interview with Hemophilia News Today.
The NHF selected Garrett Hayes, 23, a graduate student with severe hemophilia A who is working toward his master’s degree in public health at the University of North Texas Health Science Center in Fort Worth, Texas. Hayes plans to begin medical school upon completion of that degree. He also works for the NHF as a development intern.
“I’ve seen medicine as the clear goal that I want to achieve, to help others to be a lifelong student and always continue learning and give back to society in a way that I can be really excited about,” Hayes said in a phone interview.
Fulton Holine, who lives in Oakland, California, said Hayes was the perfect choice to receive the scholarship, which helps subsidize his internship. The cost to host an intern is between $4,000 and $6,000, Uyeda said.
“He has the same spirit that Jason had in terms of living a full life, being active in sports, and wanting to benefit healthcare for the future,” Holine said of her first encounter with Hayes on a video call. “I wish it was Jason sitting there right next to him, but it’s not. I think this is the next best thing.”
The NHF is still working out details of the scholarship because of delays caused by the COVID-19 pandemic. Uyeda was not able to confirm the number of people the NHF plans to give the award to each year. The organization, however, is striving to raise $100,000 through individual donations to be shared among future recipients.
To be considered for the scholarship, interested participants must be current or former members of the NHF’s National Youth Leadership Institute (NYLI). The NYLI is a two-year professional development program that offers three tracks for students to learn more about outreach, advocacy, or the nonprofit business. About 150 people have gone through the program, including Hayes, who graduated from it in 2019.
“When I was chosen I felt very honored and I did my best to learn more about Jason Fulton and his story,” Hayes said.
Hayes is an avid runner and has completed five marathons, rare feats for a hemophilia patient. He’s run two races to raise money for the NHF, including the New York City Half Marathon in 2018 and the New York City Marathon in 2019. He raised a total of $5,700 from the races.
Fulton Holine was surprised to hear about Hayes’ running when she first met him, as hemophilia causes internal bleeding, leading to painful swelling in the joints. But thanks to regimented self-infusions with blood clotting factor, Hayes has been able to stay active in a way that wasn’t possible in Fulton’s time.
“There’s been a lot of wonderful progress made on the heels of what we learned with an entire lost generation,” Fulton Holine said, referencing the other young people with hemophilia who died of AIDS and other complications from the disease. “And I think that just helps this current generation continue to fight for improved treatment, for research, and to appreciate where we’ve come from, and not to let that story be forgotten.”
Now with gene therapy and other experimental treatments, Fulton Holine has met men in their 40s and older who have a mild form of the disease and need to infuse only before surgeries or because of a traumatic event. She said it’s “thrilling” to see the recent progress made in treating hemophilia.
“I was born in a really fortunate time as a hemophilia patient in terms of what the standards of treatment are as well as safe and efficacious medications that are available to us,” Hayes said. “But in order to get to this point, a lot of people in our community have had to shoulder extremely unfair burdens.”
When Jason Fulton was growing up, his mother would have to endure a four-hour drive to Los Angeles from the Central Valley for him to get prophylaxis, a preventive infusion of clotting factor to help avoid bleeding. Treatment was not readily available and Fulton sometimes would have to wait for the product to be flown in.
It prompted Fulton Holine, along with other mothers of kids with hemophilia, to start a local NHF chapter in the 1970s and advocate for a treatment center closer to home. Because of their efforts, Valley Children’s Hospital established a monthly hemophilia clinic.
When her son died, Fulton Holine took a step back from the NHF until recent years.
Dana Francis, a social worker out of UC San Francisco specializing in adults with bleeding disorders, reached out 20 years after Fulton Holine lost her son to ask if she would share his story. She accepted, saying she needed time to work up the strength to talk about his life.
That opened a door for Fulton Holine to re-enter the hemophilia community. She attended the groundbreaking in 2017 of the National AIDS Memorial Grove Hemophilia Circle in San Francisco, where her son’s name was engraved. There, she met Uyeda and Brett Spitale, vice president of advancement at the NHF.
At a later event with Jeanne White-Ginder, mother of hemophilia and AIDS advocate Ryan White, namesake of the Ryan White Comprehensive AIDS Resources Emergency Act of 1990, Fulton Holine and the NHF representatives had more conversations about how to honor Fulton’s life.
Uyeda and Spitale saw how much it meant to Fulton Holine to see her son honored at the Memorial Grove, and began discussing different ways to continue his legacy. The scholarship seemed like a great fit as Fulton Holine had already established a small scholarship at her and Fulton’s alma mater, Fresno State. Jason was awarded a degree posthumously after his mom discovered he had completed enough units before his death.
“I’m just thrilled to see these guys accomplish Jason’s dreams,” Fulton Holine said. “I couldn’t want anything more out of this.”