Adam Singer was a senior at West Virginia University when he started experiencing foot pain. Doctors identified the issue as a cyst and surgically removed it. Five days later, on September 12, 2012, his parents received a phone call.
"That is the day that we go by. People go by 9/11, we go by 9/12/12," David Singer, Adam’s father, says. "I was good two minutes before that phone call came. The next thing I knew, my world shattered."
Doctors diagnosed Adam with synovial sarcoma. As treatment began, New Yorkers David and Karen were frustrated by the lack of options for their son. They had been following the same regimen week after week, David says, "and it was brutal." Adam, a former varsity baseball player with a magnetic personality, never gave up. After losing two toes and being told he may not run again, he continued playing basketball with his friends. The Singers even have a video of Adam racing his younger brother, Marc, in front of their house. "His competitive drive gave him the will to fight," David says. "It made him a great role model for his brother, for me, and for Karen."
Adam passed away in 2014 at the age of 24, but his determination still inspires his parents. "It’s what drives us to continue to fight and find a cure," David says. In 2017, he and Karen launched the Singer Strong Foundation and started holding grassroots fundraisers at bowling alleys, baseball fields, and restaurants in and around their hometown of Long Island. To date, the Singers have raised $32,000 to advance research for synovial sarcoma.
"The foundation gives us a purpose," David says. "We realized how small of a population gets this and that there was very little funding." Sarcomas, cancers of the flesh and bone, represent only 1% of all cancers. According to the Sarcoma Foundation of America, accounts for 8–10% of all sarcomas. The Singers initially struggled to find a researcher focused on this rare disease, but during a 2016 cancer fundraiser at Yankee Stadium, they met doctors who told them about Huntsman Cancer Institute’s (HCI) Kevin Jones, MD. Dr. Jones leads HCI’s Sarcoma Disease Center and runs an where research focuses on sarcomas in young people. For the Singers, it was a match.
In the summer of 2018, and present him with their first donation of $10,000. "It was very emotional. When we talked about Adam and told him about what kind of personality he had, he really listened," Karen says of Dr. Jones. "We could see what kind of special person he is." The Singers donated another $22,000 in December 2020, and hope to continue raising money.
Dr. Jones is deeply grateful for the Singers and other families like them. "To see them dig their heels in and make a stand for something like this means a lot," he says. "It’s really profound and powerful. I hear a story like Adam’s and I think we have got to do better."
Thanks to research at HCI and peer institutions, companies are developing new drugs and launching clinical trials to treat the disease. "This is not the silver bullet for synovial sarcoma yet, but my guess is that it is going to be heading us in that direction. It’s exciting," Dr. Jones says. As drug development progresses, he also expects HCI will be involved in larger clinical trials.
These are meaningful strides for a deadly disease that primarily impacts adolescents and young adults who are developing their talents, forming their social identities, and starting their careers.
Adam was a popular member of his college fraternity. He had just started coaching a youth baseball team before his diagnosis. After treatment began, Adam graduated from college and started studying for the LSAT—a legacy his brother continued by graduating from law school this year. "Adam was the powerhouse of our family," David says. "Everybody gravitated toward him. He was an incredible competitor, and an unbelievable son and brother."
As scientists work toward better treatments, they owe thanks to families like the Singers. "They have gone through this loss and want to give back," Dr. Jones says. "They hope that in the future, another parent will have a better option for their child."