Our Accomplishments, 1994–2009

• Local funding of over $1 million during our first eleven years of neuroblastoma cancer research grants. Please note that of nearly $100 million spent nationally by the American Cancer Society, only 3.5% was allocated to pediatric cancer research.
  
• Update, production and national distribution of hundreds of Neuroblastoma Cancer Family Resource “Survival” Guides. This includes invaluable information for families with children diagnosed with neuroblastoma. The book is now on-line and available for download. This resource guide includes the latest treatment and information on clinical studies, national and local resources, pertinent health care forms and assistance, neuroblastoma terms and childhood cancer publications, etc. Now available from our website.
  
• Distribution of Holiday & Valentine presents and toys to oncology patients at Children’s Memorial and University of Chicago Children ’s Hospital, many of whom are terminal.
  
• Supplying toys to the hospital’s oncology treasure chest where children pick a “treasure” after a difficult procedure like a bone marrow aspirate. Just knowing they can pick out something special helps many of the children get through a difficult procedure.
  
• Setup and maintenance of NCCS website, as well as preparation and national distribution of a periodic newsletter to families with children having neuroblastoma cancer as a forum to exchange ideas, advise of current treatment and resources available to patients and their families and promote fundraising, research, etc. Our internet site and newsletter includes exchange pages so families can contact other families affected by this disease and link to the other resurces to provide the most current treatment information to help save children’s lives.
  
• Distribution of our organization brochure to pediatricians nationally to help educate them on neuroblastoma cancer, and working with the American Cancer Society in their pediatrician education program to include neuroblastoma symptoms and detection in their curriculum. When neuroblastoma is detected in stage I, there is a greater than 80% long-term survival rate; however, the majority of children are detected in stage IV, which has a much lower long-term survival rate. Many families have pointed out that their pediatricians took weeks, or even months to detect their child’s illness, if they were able to do so at all.
  
• Working with legislators to inform them of the need for funding medical research in pediatric cancer and to point out the discrepancy of funding. For example, over $595,000 per diagnosis is funded for pediatric AIDS while only $9,000 per diagnois is funded for pediatric cancer by the National Institute of Health. Currently, funding decisions are based on number of incidents instead of life years saved. For more information, see our compelling statistics that mandate increasing pediatric cancer research!