What it is
Neuroblastoma is an aggressive form of cancer that randomly affects infants and children, most frequently under the age of 5.
Cancer cells form in immature nerve tissue (neuroblasts) in the neck, chest, spinal cord or adrenal glands. The cancer forms most often as solid tumors and can spread elsewhere throughout the body like the bones and bone marrow. It can also spread to soft tissue, major organs and the brain.
How It Behaves
Neuroblastoma is aggressive, cruel and constantly mutating. It will often become immune to the current treatments that are available which leaves our children with very few options. Children are dying not only from the cancer but just as often from the lack of safe and effective treatments.
The symptoms for Neuroblastoma widely vary making it difficult to diagnose. There are currently no tests to catch cancer early in children. Because of this, 80% of children have already metastasized at diagnosis.
The chances of survival for Stage 4 Neuroblastoma is only 40-50 percent. And if that number isn’t devastating enough, the chance of relapse is 50 percent. Once a child relapses with Neuroblastoma there is no cure or current protocol in place and the chances of survival lower considerably.
Lack Of Funding
The funding by the government for childhood cancer is pennies. Only 4 percent of the federal government’s research funding is dedicated to pediatric cancer. That’s not 4 percent to Neuroblastoma, but 4 percent to all childhood cancers.
Because of the lack of funding the treatments for pediatric cancer are harsh and outdated. Since 1980, fewer than 10 drugs have been developed for use in children with cancer. The list of side effects are long and can be just as devastating as the cancer itself. More than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age.
Cancer is the number one cause of death by disease in children. 43 children are expected to be diagnosed with cancer every day. Childhood cancer is not rare.
Our children deserve better.
there is hope
And that's why we're here. There are real, achievable solutions to these problems. But someone must take it upon themselves to FIND those solutions. And so we did. And now we have a plan. And we need your help.
An Important Crisis:
800 kids per year
According to the American Cancer Society, there are about 800 new cases of Neuroblastoma in the United States every year.
And the average age of a child when they are diagnosed is 1 to 2 years. And nearly 90% of cases are diagnosed by age 5.
Rare = Less cared about
Neuroblastoma is considered to be a “rare” cancer, it is the most common solid tumor cancer in children. The more rare a cancer gets the lower the survival rate goes, some as low as zero percent.
Does 800 new kids every year sound unimportant?
We need More research
By the time kids are diagnosed with Neuroblastoma it has already metastasized in 80% of patients.
If they make it into remission, relapse happens in at least 50% of kids with Neuroblastoma. There is no cure or current protocol in place for recurring or relapsed Neuroblastoma.
And that's if the treatments don't kill or cripple them first.
We Can Change this
We are fundraising for a research campaign that specifically works to prevent relapse and to find less harsh treatments for Neuroblastoma. Learn more about the research consortium here.
There are better solutions on the horizon but only if we make those solutions a priority.
References & Resources
Memorial Sloan Kettering Cancer Center
American Cancer Society
The Children’s Hospital of Philadelphia
Helen DeVos Children's Hospital
emery inspired a rebellion
She was small but she was fierce.
Emery was only 2 years old when she was diagnosed with cancer, not just cancer but Stage 4 Neuroblastoma with the odds stacked against her from day one.
She fought more bravely than any child ever should, but the available treatments failed her.
Now we fight back. This foundation was created to save and support kids with Neuroblastoma - in memory of Emery.
We must change this.