Love Inspires Landmark Legislation

By Robyn Raphael, 
CEO/Founder, Keaton Raphael Memorial

Robyn and her son Kyle (then age 10) posed for this photo in Senator Dianne Feinstein’s Washington, DC office in 2004. Robyn has made over twelve trips from Roseville to the Capitol, in the past eight years, as she and other parents fight tirelessly to fund research.

We were an unlikely bunch of parents, visiting Washington D.C. in the fall of 2000. We did not go to visit monuments or museums, or to take in the historic sites of our nation’s capital. No, our journey was personal. Fifty strong, we gathered from more than fifteen states with one common purpose and one common hope: to educate our legislators about childhood cancer and bring families one step closer to a cure.

Cancer remains the leading cause of children’s deaths by disease in the U.S., and it does not discriminate. As we gathered for that first meeting eight years ago, our stories echoed with the ways this horrific disease had devastated our families and changed our lives forever.

We shared pictures of our beautiful girls and boys and spoke of different childhood cancers—using medical terms and naming treatment studies, sharing laundry lists of procedures, surgeries and chemotherapy treatments—as if it was a normal language. Some of us had to end our sentences with the words “lost” and “angel,” while others spoke of the “battle” they were still “fighting.” No matter where we were in our journeys with cancer, one thing was clear: We had to be our children’s voices because no one was speaking on their behalf.

We entered more than 100 legislative offices that year. To our horror, we found there was a serious lack of research funding for childhood cancer at the national level. We desperately needed our lawmakers to take notice that children get cancer too, and we urged them to make a commitment to invest in a cure!

It was a quick education on the workings of Washington, and we soon learned we would need to continue educating our representatives, thanking supporters and holding others accountable.

That trip in the fall of 2000 turned into twelve more visits throughout the next eight years. Our group of fifty parents from fifteen states became 300 strong, from more than forty-five states, and several of our annual visits resulted in funding for research through appropriations requests!

Then Congresswoman Deborah Pryce from Ohio added her voice to our cause. One of Washington’s very own, Congresswoman Pryce had lost her nine-year-old daughter, Caroline, to neuroblastoma in 1999. Under her leadership and that of the CureSearch National Childhood Cancer Foundation, we were able to effect social change.

On July 29, 2008 the Caroline Pryce-Walker Conquer Childhood Cancer Act was signed into law. This landmark legislation will authorize $30 million a year in funding for childhood cancer research for five years. It’s the beginning of a future full of hope for our children because the more researchers understand the biology of different types of childhood cancers, the closer they get to a cure and to developing less toxic treatments.

We have come a long way, but we know that our journey is not finished. Despite successful research efforts in some childhood cancers, this set of diseases will still claim the lives of over 2,400 children this year, and three out of five children who survive cancer will suffer long-term side effects from treatment due to toxicity. Our best weapon in battling this disease is research. Working together, we really can make a difference!

Robyn Raphael co-created the Keaton Raphael Memorial in honor of her son. The nonprofit organization is dedicated to helping childhood cancer families in Northern California through financial assistance, education, advocacy and research. You can contact KRM through the Roseville home office: 916-784-6786 or connect online at www.ChildCancer.org.