Saugerties has not been spared the horror of pediatric cancer. Reminders of children who have fought, are currently fighting or have lost the battle with the disease are all around, from a memorial tree planted in the Grant D. Morse playground to a fundraiser held at the Kiwanis skating arena last December. One local mom has vowed to do her best to spread greater awareness of this epidemic, and to raise funds for research.
When Gloria Darmanin moved to Saugerties five years ago, she hadn’t given a thought to pediatric cancer. One day, her niece came home from school with a flier for a fundraiser for a student with cancer. Shortly after that, Darmanin met another mother whose child, an elementary school student, was in remission. A little later, a new friend of hers was at a birthday party with her young son when he began feeling unwell. The following week, she says, he was getting chemotherapy in Albany. “It happens that quick,” Darmanin said. “Then it was three more children in our immediate area. I started following any pages on Facebook of local children to get updates. You quickly were pointed in the direction of another and another. It hasn’t stopped.”
This spurred Darmanin to do something that would raise both awareness and money. She learned about St. Baldrick’s, an organization that was started in 2000 by a few friends in New York City. The organization’s signature events are parties held across the country during which people who have collected donations have their heads shaved. The organization is volunteer-driven and is the largest private funder of childhood cancer research, raising $154 million since 2005.
It is critical, Darmanin says, that more money goes specifically to pediatric research for several reasons. According to the Arms Wide Open Childhood Cancer Foundation, less than four percent of the government’s funding for cancer research goes to childhood cancers. Further, only two new drugs have been approved by the FDA for children with cancer in the past 20 years. This means most children are on the same kinds of drugs as adults with cancer, wreaking havoc on their small bodies. The American Childhood Cancer Organization says this causes 30 percent of childhood cancer survivors to suffer severe side effects from treatment later in life, including kidney and heart failure.
Darmanin began working on her St. Baldrick’s event at the end of last year, signing up “shavees” and organizing raffles and entertainment. As of the third week in February, more than 70 people had signed up. “Shavees range from stay-at-home mothers, family members of a child that has battled cancer, elementary aged boys and girls to police and everything in between,” she said.
Grant D. Morse Elementary School has formed a team, as have the Kingston and Ulster Police Benevolent Associations. Together, they have already raised over $18,000.
Darmanin says unlike the day after running a 5k for charity, when no one knows what you did the day before, shaving one’s head is a lasting commitment. St. Baldrick’s gives shavees buttons encouraging others to ask them why they’re bald. This gets people talking and spreads awareness.
Besides talking about how little funding childhood cancer receives, the foundation encourages people to talk about how prevalent pediatric cancer truly is. According to the National Cancer Institute, cancer is the leading cause of death in children and adolescents. The Children’s Oncology Group says 13,500 children under 18 are diagnosed with cancer every year. Seven children a day die from cancer. Darmanin says most people think childhood cancer is much rarer than it actually is.
In addition to promoting awareness, those who shave also show solidarity with children going through chemotherapy. Darmanin says choosing to become bald is a way to show “bald is beautiful.”
The event, which will include Irish step dancing and a performance by bagpipers as well as raffles and children’s activities, will be held on Saturday, March 14 from 11 a.m. to 3 p.m. at the Senior Center on Market St. To sign up or donate funds, visit tinyurl. com/saugertiesbaldricks.