|By Carley Dangona
Members of the Soupy for Loopy Foundation Inc. presented a $40,000 check to the national Children’s Oncology Group Foundation to support a 14-gene signature project. Pictured left to right: Janice Visconti, Mark Sypek, Debra Sypek, Sandra Kosko, Dr. Wendy London, lead statistician on the Neuroblastoma Committee of the national Children’s Oncology Group, and Richard Kosko.
Reminder Publications submitted photo
WEST SPRINGFIELD – To date, the Soupy for Loopy Foundation Inc. has raised $190,000 in support of neuroblastoma research, a rare cancer that afflicts children.
The foundation hosted its 8th annual Soupy for Loopy fundraiser this past October in honor of Laura Sypek, who passed away in 2006, at age 11, from the disease – she would have turned 19 this year. Each year the event features a golf tournament, a raffle and Sypek’s favorite meal, tomato soup with elbow macaroni.
“We’re trying to make a difference in her memory,” Sandra Kosko, president of the foundation and Sypek’s aunt, said. “We’re humbled by their [people’s] generosity.”
Kosko cited the goal of the fundraising is to help with “the evolution of research” by educating the public about neuroblastoma and the organizations tasked with treating the patients and finding a cure.
“Although it’s considered rare, there’s still 600 to 700 cases – each represents a child affected by the disease,” Kosko said. “Hopefully it [the donation] will take researchers to another avenue they can pursue.”
She explained that research for this type of cancer has made “slow progress,” and needs more attention. Kosko stated the genetic makeup of the tumors is a main area that needs more study for doctors to better pinpoint what treatments will best suit each patient.
“Sometimes treatment works and sometimes it doesn’t. [Doctors] don’t know if a patient will relapse until it happens,” Kosko said. “Laura’s parents ran out of options. We want to help save other children.”
Kosko encouraged others to get involved. “If you can imagine what it must be like to have a very sick child with a poor prognosis of life and want to make a difference – it affects everyone, siblings, parents – your whole world is turned upside down and will never be the same,” she said.
“It’s because of people like you and events like this that make what we do possible,” Kosko commented, adding that the majority of the participants knew Laura or her family. “We’re happy to see the same people come year after year,” she said.
Each year, the Soupy for Loopy Foundation chooses a different recipient for its donation. This year, it donated $40,000 to the Children’s Oncology Group in support of a 14-gene signature neuroblastoma research initiative.
“This research initiative will test neuroblastoma tumors using biologic markers to better predict which children are at risk for relapse earlier in the treatment process. All board members voted unanimously to provide this funding because, if it proves to effectively predict outcome, then children will be spared unnecessary therapies while advancing knowledge toward more effective treatments for all children afflicted with this disease,” Kosko said.
Dr. Lisa Diller, an internationally recognized leader in childhood cancer and Soupy for Loopy Foundation’s medical advisor, said, “One of the things that is most pressing is figuring out which children with neuroblastoma will respond to ‘up front’ therapies that we currently use, and which need to try more experimental therapies. The cure rate for high risk neuroblastoma is about 50 percent but we still don’t know, until it happens, who are the ones at risk for relapse.”
She continued, “For this, we need to develop improved testing methods to predict those patients with neuroblastoma for whom current therapy will be inadequate. We have a clue about this, in that biologic markers might be available that would allow us to do this prediction.”
Soupy for Loopy Foundation is an all-volunteer 501(c)(3) charitable organization established in 2007. Previous years’ funding has been used to make clinical trials available sooner at multiple sites across the country, to support a first-ever neuroblastoma vaccine trial at Memorial Sloan-Kettering Cancer Center, to support research initiatives at The Children’s Hospital of Philadelphia that will re-engineer targeted radiation therapy which promises to be much more effective and safer for the children, and ALK genetic testing of neuroblastoma tumors in the national setting at the Children’s Oncology Group. For more information, visit www.soupyforloopy.org.
To make a tax-deductible donation, make checks payable to Soupy for Loopy Foundation and mail to Soupy for Loopy Foundation, Po Box 474, West Springfield, MA 01090. For more information, contact Kosko at 636-1234 or email@example.com.
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