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Super-PACs for pediatric cancer research

By Bob Crawford – September 17, 2015, 08:30 am – The Hill – See Original Here

In an August 1 New York Times article “Small Pool of Rich Donors Dominates Election Giving” we learn that almost half of the $388 million raised by super-PACs this year was donated by fewer than 400 families. Compare that unprecedented sum with the $264 million that the National Institute of Health spent on Pediatric Cancer research in 2014. This is frustrating for parents whose children are suffering from cancer.

For me, that frustration is palpable. Four years ago, my five-year-old daughter, Hallie, was diagnosed with a rare brain tumor called an ependymoma. We had no idea she was sick until the morning that my wife found her unresponsive in her crib. She has been treated twice at St. Jude Children’s Research Hospital, in Memphis, Tennessee. If her cancer returns all treatment options will be purely experimental.

September is Childhood Cancer Awareness Month. Here are the two statistics you need to know: this year, according to the American Cancer Society, there will be 15,780 new pediatric cancer cases diagnosed, and approximately 2,000 cancer -related deaths for individuals aged 0-19.

On August 2, a sweet little six-year-old girl I met once named Hope passed away. She suffered from stage-3 Rhabdomyosarcoma-a cancer of the muscle tissue. A few weeks later, a ten-year-old boy named Micah for whom our family had been praying, died as a result of the same form of cancer from which my daughter had suffered.

If I know two children who have passed recently, perhaps you know two more?

It’s sad that the true magnitude of childhood cancer does not bring with it the media attention it deserves, and so America has yet to rise to the challenge of defeating it.

But I am hopeful.

Last year, Leah Still, the five-year-old daughter of Cincinnati Bengals defensive tackle Devon Still, was diagnosed with stage-4 neuroblastoma. Her father’s willingness to publicly chronicle their family’s hardship highlighted his daughter’s bravery and brought this disease to the forefont of our national consciousness. This summer, Republican Congressman Michael McCaul from Texas introduced the Childhood Cancer STAR Act, an ambitious piece of legislation that aims to better identify and track childhood cancer rates, improve the quality of life for childhood cancer survivors, and fast track experimental therapies for children who have run out of options.

This bill could be a step toward allocating resources for children suffering from cancer and the researchers who are trying to help them. Unfortunately, given the political climate in which we live getting this bill through congress is going to be tough.

So today I am proposing a campaign for the remainder of September in which every super-Pac makes a donation to a pediatric cancer research initiative.

Only 2 of the major party candidates will cross the campaign finish line-that leaves money on the table. Former Texas Governor Rick Perry’s Super-PACs raised more than $17 million. After dropping out of the race last Friday, the governor could still be a winner if his super-PACs donate some money to pediatric cancer research and publicize it.

Our research institutions are not short on talent or ideas, but in the money that goes into making them a reality. Consider this- for a fraction of the cost of an ad buy in Iowa or New Hampshire you can help fund the pediatric inherited genomics research pipeline at Memorial Sloan Kettering Cancer Center, or support the NOAH Protocol at MD Anderson in Houston, Texas. Where I am from in North Carolina, $300,000.00 would help Dr. Timothy Gershon at UNC Hospital take an experimental treatment for a pediatric brain tumor called, Medulloblastoma from his laboratory to patients’ bedsides. These are just a few among dozens working to eradicate childhood cancer who are in need of financial support.

St. Jude Children’s Research Hospital was founded by entertainer Danny Thomas in 1962, and is unique throughout the world. 75 percent of its $2 million a day operating budget comes from pubic donations. It’s equally impressive that no family ever receives a bill for their child’s treatment. Thomas once famously said, “ I’d rather have a million people give me a dollar, than have one give me a million. That way you’ve got a million people involved.” Well, during the month of September I’d love to see super-PACs be involved in pediatric cancer research.

And if they want to give a million dollars, we’ll take it.

Crawford is the bassist with the Avett Brothers and an advocate for pediatric cancer research.