History

CNCF President, Pat Tallungan, was the Co-Administrator of the N-Blastoma online support group sponsored by ACOR (Association of Cancer Online Resources) for 4 years.

This listserv has over 350 subscribers from 8 different countries around the world. It provides a place for families to talk with each other about different treatment options available for neuroblastoma; discuss side effects; different diagnostic tests being performed; medical research studies; information on doctors and hospitals specializing in neuroblastoma treatment and just a place where everyone else knows exactly what you feel and what you are going through.

CNCF President, Pat Tallungan, testified in front of the Congressional Childhood Cancer Working Group. Congresswoman Deborah Pryce from Ohio sponsored this hearing.

Approximately 30 parents, patients, survivors, doctors and representatives from Childhood Cancer Organizations testified about their experience with childhood cancer. The overwhelming theme was for Congress to recognize the need for increased funding for research, education and awareness.

CNCF was one of three Childhood Cancer Organizations that founded the first Childhood Cancer Awareness Holiday Tree in Washington, D.C.

On December 15, 2000, the first ever Childhood Cancer Awareness Holiday Tree shined brightly in the foyer of the Rayburn House Office Building. Two thousand gold ribbons adorned the 16 foot Douglas fir. The gold ribbon is the symbol of Childhood Cancer Awareness.

CNCF is a member of Children’s Cancer Leadership Network.

CCLN was formed by Susan Weiner PhD. of the Children’s Cause, Inc., to promote an avenue of advocacy for its members on a local as well as a national level. The 30 participants from all over the country collaborate on such topics as “end of life issues” and “drug development issues.”

CNCF initiated discussions for a Neuroblastoma License Plate in Illinois.

In July 2002, Governor George Ryan of Illinois signed into law SB 2185 authorizing the “Stop Neuroblastoma” license plate. Proceeds for this special plate will help fund Neuroblastoma research and education.

CNCF has sponsored 4 Children’s Neuroblastoma Conferences for parents.

Funded by a grant from the Kemper Educational and Charitable Fund, CNCF organized and sponsored the first ever Children’s Neuroblastoma Conference in June 2002 for families across the country and Canada. Our second conference in June 2003 more than doubled in size with over 100 parents, grandparents and young adult patients attending. Leading Neuroblastoma (NB) researchers presented topics on the biology of NB, new therapeutic agents available for children, relapse therapies and discussions on long term survivor issues. CNCF paid for the major expenses for the families so they might attend this unique forum of presentations and question & answer sessions.

CNCF provides a newsletter for families.

CNCF produces a newsletter for families that includes medical articles written by the leading Neuroblastoma researchers in this country; stories on long term survivors; issues affecting childhood cancer in general; fundraising and awareness programs and a special section just for Kids.

CNCF is a collaborating partner with other childhood cancer organizations for Conquer Kids Cancer Gold Ribbon Days.

CNCF works with other childhood cancer organizations to help plan and promote Childhood Cancer Days in Washington, D.C. As part of previous planning committees, CNCF assisted in setting the agenda for the guest speakers and their topics and choosing the points for Advocacy issues.