WILLIMANTIC, Conn. — Since 2012, Eastern Connecticut State University has rallied in support of people with life-threatening blood diseases, hosting six marrow registries in four years. Eastern’s total number of registrants jumped to 1,438 on Dec. 1, after an additional 316 people added themselves to the “Be The Match” database, the largest marrow registry in the world.
The issue of life-threatening blood diseases became a campus priority at Eastern in 2012 when student and soccer player Jon DeCasanova was diagnosed with aplastic anemia and lymphatic cancer. DeCasanova was given less than a one percent chance of survival by some doctors, but made a miraculous recovery after receiving years of treatment and a cord stem cell transplant.
Since then, 15 registrants from Eastern have been identified as “matches,” or suitable donors for blood/marrow transplants. Gavin Neuendorf, a senior sociology major and soccer player, is the latest to make a life-saving donation.
“It all started here,” he said. “I registered my freshman year, but never thought they’d actually contact me.” According to Be The Match, one in 300 people will be selected as the best possible donor for a patient; with one in 430 actually donating.
People identified as matches have two options for donating. One method is via a peripheral blood stem cell (PBSC) donation, a nonsurgical procedure similar to giving blood. The other method is via a bone marrow donation, a surgical procedure in which bone marrow is extracted directly from the pelvic bone. In early 2016, Neuendorf underwent the surgical procedure, at the doctor’s request, at Bringham and Women’s Hospital in Boston.
“The day of the procedure, I went in, went to sleep, woke up and it was all done,” he said. “For me it was a really small sacrifice for something so big to someone else.”
Neuendorf’s donation went to a woman in her 50s. He looks forward to the prospect of meeting her after a year, per policy of Be The Match.
“When we get these transplants as cancer patients or blood disorder patients, we have a new birthday,” said DeCasanova at last year’s registry. “My birthday is now December 11, 2012. That’s how serious it means to us as patients. It gives us a second chance at everything. I’ve had so many great memories that I wouldn’t have had if things didn’t work out how they did.”
Speaking to his own recovery, Neuendorf added, “I took a month off (from physical activity) and came back fine. I have four small dots on my lower back; you can’t even see them.”
When Eastern started its relationship with Be The Match, the men’s soccer team spearheaded the effort; posting flyers, making announcements around the Student Center and encouraging those passing by to get registered. This year, other student organizations stepped up, including the Pre-Health Club, Biology Club and Love Your Melon, a nonprofit organization with a chapter on campus that is focused on pediatric cancer. Among other tasks, students prescreened interested donors for eligibility — using a questionnaire concerning general health — and administered mouth swabs.
After the initial registry in 2012, which received an overwhelming amount of support with more than 600 registrants, the soccer team, led by Coach Gregory DeVito, adjusted its goal to a more modest 100 registrants per registry. Considering the 316 that showed up last week and Eastern’s relatively small population of approximately 5,300 students, DeVito was impressed by the turnout. Be The Match representatives commented that Eastern’s support beats schools with much larger campus populations.
“There’s no guarantee in the business of cancer,” said DeCasanova. “What we’re doing here is at least giving someone a chance to fight.” With DeCasanova’s story and Eastern’s support, the University was honored in 2014 with the National Marrow Donor Program/Be The Match Awareness Award.