A Minnesota family donated $1.25 million to the “Be The Match Foundation” towards building a better network for patients and families searching for life-saving clinical trials, according to foxnews.com.
Bob and Diana Carter recently made the donation to the Minneapolis-based nonprofit organization run by the National Marrow Donor Program in honor of their son, Jason Carter, who died in May 2016 after battling Leukemia for over four years, according to foxnews.com.
Jason Carter was diagnosed with leukemia in 2012 and after more than four years of battling the disease, the 28-year-old passed away in May 2016, according to kare11.com.
“He had the kid form, ALL, which is very treatable,” Diana told Fox News. “But he found out about a week later that he had a chromosome mutation which is very difficult to treat.”
Carter underwent a month of intensive treatment involving chemotherapy and received a bone marrow transplant from an unrelated donor set up by Be The Match, according to prism.bio.
In January 2014, cancer returned which led to the Carters learning about the complex and difficult world of clinical trials. Bob Carter had read about a treatment being explored at the University of Pennsylvania that targeted Jason’s mutation, but his doctors were unaware of it and sent the Carters to ClinicalTrials.gov, the national database for trials and ongoing research across the United States, according to foxnews.com.
“We started searching and trying to find some information that would work for Jason’s type of disease,” Diana said. “Then we talked to about five centers that were offering a program — we ended up going to visit the National Institutes of Health in Bethesda and Memorial Sloan-Kettering [Cancer Center in New York].”
Through ClinicalTrials.gov, the Carters tracked down a potential trial target Jason’s mutation at the University of Texas M.D. Anderson Center in Houston and asked about it. The doctor evaluating Jason was unaware of the trial but had Jason enrolled and it worked to force cancer into remission. Be The Match arranged for a cord blood transplant in July, according to foxnews.com.
Although he didn’t suffer any major complications from the transplant, Jason had contracted another life-threatening virus. The harsh treatments began to cause stomach issues and he was, and he was given immunosuppressive drugs to lessen the symptoms. But cancer returned, according to foxnews.com.
“On May 10 Jason said, ‘Let’s get me healthy,’” Diana said. “On May 11 he said, ‘I’m done, take me home,’ and on May 12, he died at home.”
The Carters met with Be The Match after Jason’s death and discussed how they could honor him in a way that would help benefit others, according to foxnews.com.
“After all we’ve been through, we really felt that incredible need to get more patients into trials so we can advance medicine,” Bob said.
Through the Carters’ donation, Be The Match started the Jason Carter Clinical Trials Program, which will work to help patients find ongoing clinical trials that are tailored to their illness. The program’s website will provide patients and families with information to better understand options and logistics of enrollment, according to foxnews.com.
“We are eternally thankful to the doctors and medical staff for their care,” Diana said. “But this is something we can do to get patients more aware of and get more access so that we can help improve the outcomes.”
In an interview with the Matador Messenger, Public Relations Specialist of the Be The Match Foundation, Megan Berg, stated that the Carter family’s donation is very generous.
“What the Carter family donated is extremely generous and notably higher than an average single donation,” stated Berg.
Attached are some talking points about Be The Match that will help people get a better understanding of what the organization does and how people can.