Jason's story: finding clinical trials when it mattered most
Jason's story: finding clinical trials when it mattered most
Original published date: 9/18/2026
When Jason needed clinical trials, his family had to find them on their own. His story changed that for others.
In 2012, Jason Carter was 24. He hadn’t been feeling well and thought he had mono. A blood test told a different story. Jason had a type of blood cancer called acute lymphoblastic leukemia (ALL). Shortly after his diagnosis, he and his family learned he had a form of ALL that was difficult to treat.
And that led the Carter family down a road to learning about and finding clinical trials.
Searching for clinical trials
Jason's parents, Bob and Diana, didn't know much about clinical trials at first. They learned fast.
The family spent hours searching on their own. They called and visited cancer centers across the country. They did research to try to understand which clinical trials might help.
It was a challenging—and at times frustrating—process.
Jason joined 2 clinical trials during his 4-and-a-half-year experience with ALL.
Those trials gave him more time with the people he loved. They gave his family more memories. And they provided his best chance for a cure.
"We hoped Jason would live long enough to find a cure," his parents said. "He had an indomitable will to live and to beat his disease. He tried every new treatment and new therapy possible. It was still not enough."
Jason passed away in May 2016 at age 28. He didn't find his cure. But his parents made sure his story didn't end there.
A gift to help other families
After Jason died, the Carter family wanted to honor his legacy by making sure no other family had to navigate the clinical trials search process alone. They made a $1.4 million gift to NMDPSM.
Their generosity helped build clinical trial navigation support for patients and families.
"Jason wanted to make a difference," the Carters said. "Only 5% of cancer patients take part in clinical trials. That number must greatly increase for outcomes to improve more quickly."
Jason's story lives on in every family who finds help instead of searching on their own.
You don't have to search alone
Today, NMDP clinical trials navigators help answer questions patients and their family members have about clinical trials and explore their options. There's no cost to talk with a navigator one-on-one. They can receive support in English or Spanish.
To get help from a navigator, patients and their loved ones can:
- Call or text 1 (888) 301-4650
- Email patientinfo@nmdp.org
- Request a connection
Free resources for patients and their loved ones
Understand clinical trials
Get answers to common questions about clinical trials. Learn how they work, what to expect and how to find one that's right for you.
Get support before and after transplant
Reach out to an NMDP patient navigator for free, one-on-one support in English or Spanish. Our navigators are here to help whether you're learning about or adjusting to life after transplant.