When William's tumor was first found through an ultrasound and the oncologist told us with much certainty that it looked like Neuroblastoma, I have to admit, I knew the name sounded familiar, but could not recall exactly what is was. Fred asked Dr. Tavares, "So this isn't cancer, right?" She calmly replied, "oh yes" with a subtle nod of her head.
Since that day back in December, I have to tell you, most everyone I've talked to (during those few conversations outside my little HEMOC world) have never heard of Neuroblastoma. They've never heard of it, let alone know it is a form of cancer. It doesn't sound so bad...it's not called, Neuroblastoma Cancer.
Not only have most Americans never heard of Neuroblastoma, the fact is, it is a highly aggressive cancer, and one in which there is no effective treatment for advanced forms. Why? The answer is simple and devastating: there is not enough money for research. Yet, consider this - since the 1950's the rate of children surviving leukemia shot from 10% to 80%. Similarly, the survival rates for other types of cancers, like breast cancer for example, have also improved significantly thanks to extensive research that developed innovative and less invasive treatment options.
In contrast, children diagnosed with cancer are faced with woefully inadequate funding from the government topped with a lack of interest from the pharmaceutical industry. These "orphan diseases" like Neuroblastoma promise little or no profit. Unfortunately no profit leaves pharmaceutical companies with little to no incentive to develop treatments.
Children diagnosed with Neuroblastoma deserve better odds of survival on par with most other cancers. Cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. But pediatric cancers collectively receive less than 3% of the National Cancer Institutes $3.1 billion dollar annual funded research portfolio of 2009. Click here to see the facts yourself: Research Funding by Type of Cancer .
For every dollar spent on a patient with breast cancer, less than 3 cents is spent on a child with cancer. The American Cancer Society gives less than 4% of its funding to childhood cancer research. Aren’t children our most precious resource? How can you put a price on a child’s life?
The bottom line is, these numbers are not good enough. The chemo drugs that treated William were developed in the 1950's to treat adults with cancer. No wonder why 3 out of 5 childhood cancer survivors will suffer from long-term side effects from their treatment....just like our William is dealing with.
We need to invest in funding for childhood cancer research ....
So please join the Relyea and Santore families as we take part in the Syracuse CureSearch Walk on Saturday October 2nd at the New York State Fairgrounds.
This walk will celebrate and honor children whose lives have been affected by childhood cancer, while raising funds for lifesaving research. This very special day will include prizes, music, and fun activities for the entire family!
Date: Saturday, October 2, 2010Registration: 8:00am
Walk Begins: 9:00am
Location: New York State Fairgrounds, Gate 7
Here’s a link to our team page:
Team William Relyea - Will Powered!
Join us for the day, for an hou, walk with us in spirit as a Virtual Walker or support those who will walk by pledging a donation.
We look forward to see you there!
1 comment:
Great job presenting the hard facts Kristie! I may have to borrow this post:)
With hope-
Meg
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