Source: North Jersey.com
With lives forever changed by a childhood cancer diagnosis, many North Jersey families will travel this weekend to Washington, D.C., for CureFest for Childhood Cancer, a multiday event to advocate for pediatric cancer research as a political priority, raise public awareness and bring together a community.
“It’s really to unite all the childhood cancer foundations, all the organizations and families, for everyone to come together and be one united voice,” said Wood-Ridge’s Linda Venezia, whose 13-year-old son Benjamin died from acute myeloid leukemia in 2012. Venezia, her husband Richard and younger son, Christian, will be at their third straight CureFest. Their foundation, Benjamin’s Hope 4 the Future, will be one of more than 100 foundations and organizations that will be part of the event.
September is Pediatric Cancer Awareness Month, and gold is the color signifying pediatric cancer.
“Every organization shares our personal story,” Venezia said. “We tell them signs and symptoms. We educate. We share that information. We encourage everyone to support childhood cancer research, to reach out to their politician to let them know they need to do more for the kids because if these kids aren’t growing up, there is no future. There’s going to be no future politicians, scientists, doctors, researchers.”
Richard Plotkin, a former trial lawyer whose grandson, Max was diagnosed with B-cell lymphoma, has put his career skills into a new cause and has become a nationally known pediatric cancer advocate.
His biggest frustration is the lack of federal funding and attention to the issue. The National Cancer Institute puts 4 percent of its annual budget toward pediatric cancer. There are 16 major childhood cancers and more than 100 subtypes, making the amount designated illogical, Plotkin says.
This year the Lily LaRue Foundation will join Benjamin’s Hope 4 the Future and the other foundations that also made an impact on Zak last year. “What struck me was how the foundations in memory of a child who had lost their battle against cancer, how so many parents, family members and loved ones just kind of came together to make a difference,” said Zak, who is decorating the foundation’s table with unicorn rubber ducks that Lily loved.
Hackensack native Jill Weiss knew one of those children well. Her son’s friend, 10-year-old Gabriella Miller, spoke to the CureFest crowd in 2013. She died two months later. Weiss was at the table for Gabriella’s foundation when she gave her speech and returned the next year for a much different experience.
“It was a much larger event, but the most important difference for me was that Gabriella was not there,” Weiss wrote in an email. “In her speech, just one year before, she had spoken about the recent deaths of friends that she had met since her diagnosis. This year, she was with them, somewhere, but not with us. Her photo was now one of many others hanging on a long wall of pictures of children who had also courageously lost their battles with cancer. Too many. Too soon.”