Originally posted in Daily Herald
During Childhood Cancer Awareness Month, neuroblastoma, an aggressive childhood cancer, will be the focus of the #20forhope social media campaign created to raise research dollars and awareness of a disease more common in infants than leukemia but sorely lacking in funding.
On Tuesday, Sept. 20, people everywhere — best buddies, neighbors, co-workers, dance troupes and cast members — are being asked to spread the word about neuroblastoma by posting dance videos of 20 seconds or more that day to social media using #20forHope, tag @cncfhope and their followers, and invite them to donate online at cncfhope.org and share their own dance videos on Facebook, Twitter and Instagram. Proceeds will benefit the Children’s Neuroblastoma Cancer Foundation, a nonprofit based in Bloomingdale and founded by the parents of a neuroblastoma victim that funds research and educational programs for families.
The foundation launched the #20forHope promotion Tuesday with a video featuring neuroblastoma survivors and kids still in treatment or dealing with the after effects, which can be severe and last a lifetime. The objective of #20forHope is to move the foundation closer to its goal of raising $700,000 by year’s end on behalf of the estimated 700 children diagnosed with neuroblastoma in the U.S. every year.
Funds will be used to support research grants, like the $35,000 the foundation recently awarded to a neuroblastoma researcher at Texas Children’s Hospital in Houston to conduct a stem cell cancer study, as well as education programs aimed at raising awareness about neuroblastoma and potentially lifesaving treatment options and clinical trials.
Neuroblastoma has been called “the great masquerader” because it mimics common childhood illnesses. It originates from immature nerve cells and manifests as a solid tumor most commonly in the adrenal glands above the kidney and in nerve tissues in the neck, chest, abdomen or pelvis. Its primary victims are under age 5. Survival rates for patients in advanced stages of disease is 40 percent, and there is a high rate of relapse.
Since 2005, the Children’s Neuroblastoma Cancer Foundation has contributed nearly $2.5 million to fund neuroblastoma research, helping to fill funding gaps that, unfortunately, are typical for lesser-known childhood cancers. In the U.S., the majority of cancer research dollars go to fight cancers most commonly found in adults. Less than 3 percent of the American Cancer Society’s funding is designated for childhood cancer research.
“It comes down to this: We can do more with more. But the reality is the way cancer research is funded, our children are largely being left out,” said Pat Tallungan, president of Children’s Neuroblastoma Cancer Foundation. “There are neuroblastoma researchers on the cusp of major breakthroughs that would give the youngest cancer victims a real chance at survival and a better quality of life. On Sept. 20, we’re asking the public to care enough to give a few dollars and hope to children and families suffering with this terrible disease.”
When Tallungan’s son Nicholas was diagnosed with neuroblastoma in 1995, there was very little information available on the disease. Tallungan co-founded Children’s Neuroblastoma Cancer Foundation in 2000, one year after Nicholas died at age 10. In 2002, the foundation held its first Parent Education and Medical Symposium to connect families with the leading neuroblastoma researchers to learn about the latest treatment therapies and clinical trials.
“(Children’s Neuroblastoma Cancer Foundation)’s motto is hope unites us,” Tallungan said. “On Sept. 20, we hope that people who care about children’s health and well-being everywhere will dance with us to give children with neuroblastoma a fighting chance.”