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Hope Street Kids
Caroline's Vision:
Leading the Fight Against Childhood Cancer
Introduction
Just five years ago, we assumed that cancer was an adult's disease. At that time we didn't conceive that kids even got cancer. Then in 1999, our family's world was turned upside down and we entered a very real and terrifying world of pediatric cancer. What at first we thought might be simple growing pains in our daughter's leg ended up being our worst nightmare. Our daughter Caroline Pryce Walker was diagnosed with neuroblastoma, a rare, aggressive cancer. After a year-long battle, we lost our precious daughter at age nine.
The tragic death from cancer of our daughter Caroline was the beginning of a crusade for us. The program we founded, Hope Street Kids, grew out of lively banter between Caroline, other children undergoing treatment for cancer and their parents in the activity room of Memorial Sloan Kettering Cancer Center in New York City. We all wanted to spare other families the fear, anger and isolation that a diagnosis of cancer brings. We were ignited into action that day, filled with determination and hope. Caroline, who was courageously fighting her cancer, was excited and optimistic about the future. We named the program that afternoon and proclaimed its mission. "Just think how many kids we could save if we had a million dollars," Caroline said.
Today, under the auspices of one of the nations' leading cancer research and education organizations, the Cancer Research and Prevention Foundation, Hope Street Kids has been shaped from Caroline's idea and our heartfelt desire to continue the fight she began. We have channeled our energies into this endeavor to make a real difference in the lives of other children while keeping Caroline's wonderful spirit alive by creating something positive in her name. We believe we can truly help families of children with cancer, fund cutting-edge research and find effective cures, and have an effect on the health and well being of all children in the . This is our fervent desire -- and our promise to Caroline.
The Problem
Pediatric cancer is the leading cause of death by disease in children. An estimated 12, 400 children will be diagnosed with cancer and over 2,300 will die from it this year. One of every 330 person in the will develop cancer before his or her 20th birthday. Some progress has been made, however. Survival rates for the more common childhood cancers, such as non-Hodgkins lymphoma and leukemia, have risen to nearly 78%. Yet even with all of our advances in early detection and treatment, only two thirds of children diagnosed with cancer survive. Childhood cancer occurs regularly, randomly and spares no social, economic or ethnic groups.
Despite these alarming statistics, we learned that just a small fraction of the dollars spent on research in this country is directed to pediatric cancer. Even in terms of cancer research dollars, children are at the bottom of the ladder. New therapies for childhood cancer have been slower to develop and very few medications created solely for children have been made available in the last two decades. In addition, we also found there are countless inequities and deficiency that exist between adult care and pediatric care, such as the lack of access to pain management, palliative and hospice care.
The Solution
Hope Street Kids has embarked on an ambitious program to find solutions. We will work to break down barriers to innovative research, and to streamline communications between patients and caregiver; between caregivers and promising new therapies.
1. Research
The first line of defense is our grants and fellowships program to provide funds for investigations into new treatment and therapy approaches to pediatric cancer. Each year, the HSK Scientific Advisory Council, a distinguished panel of experts, review proposals for research in treatment, prevention as well as behavioral or psychosocial studies related to childhood cancers. This peer-review process is accepted by the National Institutions of Health grant-review standards. Grants and fellowships are awarded annually to researchers in academic medical centers across the country. These studies will represent the best options for future therapies that can be rapidly translated into treatment for thousands of children.
2. Education
Children and families facing cancer need information. One important goal for Hope Street Kids is to help families understand the disease and learn what treatment options are available. As a central resource for information, we will help families make vital connections to health care providers, research studies, and other families facing similar battles. Using the power of the Internet, the media and grassroots outreach, Hope Street Kids will educate about childhood cancer.
3. Advocacy
Using the power of Congress and the combined influence of a coalition of organizations that share our interests, HSK will work to:
- Increase federal funding for research, speed delivery of promising new therapies;
- Educate more pediatric cancer professionals, make clinical trials of new treatments available to greater numbers of children;
- Increase access to quality care, and expand support for the emotional and social needs of families and children.
HOPE for the Future
There are many challenges that lie ahead in the war on pediatric cancer. We are dedicated continuing the fight Caroline began, and we are dedicated to honoring her memory and to honoring lives of each child affected by cancer.
Recently, the Director of the National Cancer Institute, Dr. Andrew von Eschenbach, publicly issued a challenge to the cancer community:
"Someday, we will eliminate cancer, but for today our immediate goal is to eliminate the suffering and death due to cancer by 2015."
We envision a world in which all kids live on Hope Street, never having to face the specter of cancer. We believe this is within our grasp, but only if we increase funding for children's cancer research and speed translation of the latest scientific breakthroughs into effective strategies to improve the quality of life for all children. Hope Street Kids is committed to funding both public and private research efforts through fundraising initiatives, and providing leadership in encouraging new and innovative research investigations. We will continue this effort until current and future advances in cancer treatment and prevention produce the HOPE for a new generation of children free from cancer. |