September Bulletin: Awareness Month Highlights

September Awareness Month Showcases Strength of Advocate Community

This Childhood Cancer Awareness Month saw a series of events in Washington, DC that demonstrated the vitality and growing influence of the childhood cancer community.

Advocates pressed Congress on several bills that would improve treatment and care for kids with cancer - most notably the Childhood Cancer STAR Act, which we are pushing to pass before the end of the current legislative session. The White House buoyed our efforts with a proclamation and briefing on research projects by the National Cancer Institute and the President's Moonshot Initiative. [Read more in below section on the the Blue Ribbon Panel recommendations.]

The annual CureFest on September 18 brought childhood cancer organizations, including the Children's Cause, and hundreds of individual supporters to the National Mall for a show of solidarity and awareness. A full day of activities and stage performances was preceded by a candlelight vigil outside the White House the night before.

In other news, Hyundai Hope on Wheels, which has awarded $115 million to pediatric cancer research, hosted a scientific brainstorming conference and a gala for Hyundai business executives and families. Children's Cause President and Founder Susan Weiner spoke that evening about our advocacy initiatives.

To cap off a busy slate of events, Children's Cause was pleased to attend the 7th annual Childhood Cancer Summit, hosted by the Congressional Childhood Cancer Caucus. Advocates heard from NCI Director Doug Lowy about new developments in research, from Greg Simon - head of the President's Cancer Moonshot Initiative - about commitments to rapid improvements in treatment, and from patients and survivors on their challenges and victories.

September may be coming to a close but our advocacy and policy work continues year-round. Please help us send a louder message to policymakers that childhood cancer can no longer be ignored:

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Pediatric Cancer Highlights from 'Moonshot' Report

The Children's Cause for Cancer Advocacy congratulates the National Cancer Moonshot Initiative - and specifically the Pediatric Cancer Working Group - on this month's release of ten cancer policy recommendations on research, clinical trials, data mining, prevention and patient engagement.

The panel's report, which was accepted by the National Cancer Advisory Board and the National Cancer Institute, was forward to a Moonshot Task Force headed by Vice President Biden and comprised of government representatives. The Task Force is scheduled to issue a report in October about proposed government initiatives relating to cancer. 

By design, the NCI Moonshot report focused on promising areas where progress is imminent. Of note to the Children's Cause are pediatric cancer recommendations around symptom management research, including survivorship, pediatric immunotherapy clinical trials, and oncoprotein research. Visit our blog for more details on these particular recommendations.

Children's Cause looks forward to working with the Moonshot Task Force and with Congress on the proposed recommendations with the hope and expectation that new targeted research improves the treatments for childrenwith cancer and maximizes survivors' well-being.

Landscape Report Reveals Gaps, Identifies Unique Barriers in Pediatric Cancer Research

A report on the current landscape of childhood cancer research was released this month by the Alliance for Childhood Cancer and the American Cancer Society, with guidance fromChildren's Cause. The report, "Translating Discovery into Cures for Children with Cancer," provides the latest information on trends, treatments, clinical trials, research funding and policy.

CCCA's president Susan Weiner sat on the report's 7-person Steering Committee to help develop this critical report. Highlights include: 

  • Inconsistent progress across cancer types, with a 40-50 percent 5-year survival rate for high-risk neuroblastoma, and DIPG remaining terminal.
  • Continuing high rates of late effects among childhood cancer survivors;
  • Barriers to pediatric cancer research and development of new therapies, including little incentive for companies and small patient populations for clinical trials.

You can read the one-page Executive Summary here (PDF).

In the News: Brain Tumors Now #1 Cause of Childhood Cancer Deaths

Because more children are now surviving leukemia than ever before, brain tumors have taken over as the leading cause of cancer deaths among children and adolescents. A new report from the National Center for Health Statistics paints an overall positive picture:childhood cancer death rates decreased by 20 percent from 1999 to 2014.

Today, 3 out of every 10 childhood cancer deaths are caused by brain cancer and one-quarter are from leukemia, the most common childhood cancer. These numbers are a reversal from 1999, when leukemia was the number one cancer killer among kids. In both 1999 and 2014, leukemia and brain cancer made up over half of all childhood cancer deaths.

It is important to emphasize that the survival rate for pediatric brain tumors has not increased -- nor has it significantly decreased over the years. A key takeaway from this report is the continued need for increased funding to learn more about all childhood cancers and the critical need for focused research to advance therapies for children with brain tumors.

New York Reception: November 3, 2016

You're invited to the Children's Cause for Cancer Advocacy's signature event of the year! Our annual reception and silent auction will take place at the James Burden Mansion in New York City from 7:00-9:30pm on November 3.

This year's event will feature William L. Carroll, MD, as our guest speaker. Dr. Carroll is the Director of Pediatric Hematology/Oncology at NYU Lagone's Hassenfeld Children's Center for Cancer and Blood Disorders. We will also be awarding the first annual Leonard M. Rosen Memorial Research Award at the event to Mary McCabe, RN, MA, Director of the Cancer Survivorship Initiative at Memorial Sloan-Kettering.

Tickets are now available!

If you have questions, contact Julie at

Jessica Kean