SHOUT OUT: A Wood-Ridge couple whose 13-year-old son died of leukemia is holding its 3rd annual “Ladies Night Out” at the Fiesta in the hopes of increasing scarce funding for pediatric cancer research.
Benjamin’s Hope 4 the Future foundation — which is sponsoring the Nov. 19 event — was named for Linda and Richard Venezia’s first-born son, who died in December 2012, nine months after he was diagnosed.
The 501(c)3 organization has helped families in need, raised funds for research and established an annual scholarship for young community volunteers.
The shop/dine/mingle “Ladies Night Out” will run from 6:30-11 p.m. and feature a four-course dinner, dessert and wine, along with raffles, door prizes, dancing and several vendors.
Tickets are $55 until Friday, Oct. 16, when they go to $65.
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Last year the foundation funded a $15,000 research grant to the Fred Hutchison Cancer Research Center for an AML (Acute Myeloid Leukemia) immunotherapy project.
It’s also provided $3,430 in aid to pediatric cancer families and a $1,000 scholarship each of the past two years.
Childhood cancer isn’t rare, but money for research is.
“Only 4% of funding is allocated to pediatric cancer research, and only two new drugs for children have been developed within the 20 years,” the Venezias note.
The couple received Benjamin’s leukemia diagnosis i11 days after his 13th birthday, when he was admitted to the hospital with a white cell count over 219,000. He was later diagnosed with AML.
After several rounds of ineffective chemotherapy, Benjamin had a bone marrow transplant. He was determined to graduate from 8th grade, but he didn’t make it to Christmas.
“Mom, my body aches,” Benjamin said to his mother after doctors sent him home.
Among many life-shattering lessons, the Venezias said, was the fact that Benjamin was being treated for a very aggressive cancer that standard drugs don’t address.
“A computer system chose our son’s treatment plan — not his doctors, not his parents but a random selection made by a computer program,” they said. “[It] chose the standard treatment plan, leaving the clinical trial he was participating in pretty useless.
“We now are left to wonder whether the outcome could have been different had Benjamin been chosen for the alternate treatment, which offered a different drug.”
The Venezias blame no one.
“The lack of pediatric cancer drugs for AML killed our son. The lack of funding for pediatric cancer killed our son,” they said. “It is very frustrating to know that children are treated with adult drugs. It is frustrating to know that as a parent your hands are tied.
“We live in a world where the impossible is possible,” they said, “yet we still have no cure for cancer and thousands of children die from cancer every year. We cannot continue to avoid funding pediatric cancer research and need to start developing new drugs that actually cure cancer.
“We need to fight for our children.”
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• 1 in 330 children are diagnosed with cancer;
•1 in 5 children will die;
• 3 in 5 will develop secondary long-term side effects;
• Childhood cancer receives only 4% of the NCI budget for cancer research;
• Cancer is the leading cause of death by disease in children;
• Only 2 new pediatric cancer drugs has been developed in over 20 years.
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