This September's Childhood Cancer Awareness Month has been action-packed! In our last post, we shared highlights of some early events: our advocacy workshop in Durham and an FDA meeting on pediatric drug development.
Today, we are pleased to bring you news from the past week in Washington, D.C. The childhood cancer community came out strong to advocate, educate, raise awareness, and #StepUp together.
Inaugural Hope on Wheels Thought Leaders' Summit (9/18): CCCA was honored to attend the Thought Leaders' Summit, hosted by Hyundai Hope on Wheels. The meeting brought together advocates, families and policymakers to hear leading scientists and this year's Hyundai Research Scholars describe their current research. The 36 research awardees each received a $250,000 grant to support their innovative research, and several shared key objectives of their projects and the importance of collaboration.
Rally for Medical Research Hill Day (9/18): CCCA was one of 300 partnering organizations asking Congress to make funding the NIH a national priority as part of this Hill Day event. Featured speakers included NIH Director Dr. Francis Collins, Senator Dick Durbin (D-IL) and Senator Amy Klobuchar (D-MN). "We are leaving some of the best science on the table because we can't figure out a way to pay for it," Dr. Collins told the advocates in attendance.
5th Annual Congressional Childhood Cancer Caucus & Luncheon (9/19): Dr. Collins was also the keynote speaker at this year's Childhood Cancer Summit, along with Dr. Ronald DePinho, President of MD Anderson Cancer Center, and Dr. Amrit Ray of Johnson & Johnson - Janssen Pharmaceuticals. CCCA extends special thanks to Representatives Michael McCaul and Chris Van Hollen, dedicated Caucus co-chairs, and their staff, for their ongoing leadership and commitment to improving the lives of children with cancer. A luncheon reception followed, co-hosted by the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer. CCCA is a proud member of both coalitions.
White House Briefing (9/19): CCCA and other childhood cancer advocates were invited to the White House for a meeting hosted by the Office of Public Engagement, featuring NCI Director Dr. Harold Varmus. Meeting highlights:
- NCI announced its newest two-year appointment to its Council of Research Advocates: Dr. Greg Aune of University of Texas Health Science Center San Antonio, a childhood cancer survivor and pediatric oncology researcher. Dr. Aune said he aims to "direct the obvious passion of [childhood cancer advocacy] groups towards efforts that resonate with the NCI and move the field of pediatric cancer research forward" during his term of service.
- Dr. Varmus announced preliminary plans for a pediatric MATCH trial, which will use DNA sequencing to identify children with advanced tumors who could benefit from therapies targeted at the errors causing their tumors. Learn more about Pediatric MATCH here.
- Alliance for Childhood Cancer Roundtable (9/20): CCCA joined other leaders to try to reach consensus on the highest priority concern in the community. While many challenges for children and families were aired, there was little doubt that increasing federal research funding and ensuring innovative use of current research funds were top priorities for childhood cancer groups.
CureFest for Childhood Cancer (9/21): Children's Cause was one of more than 75 organizations in attendance at Sunday's CureFest on the National Mall. The day featured an awareness walk with over 1,000 participants followed by a family-friendly festival with educational exhibit tables. Dr. Peter Adamson, COG Chair, headlined a full slate of moving speeches, live music, and special tributes. Children's Cause sends thanks to everyone who took the time to stop by our table and become an advocate for change by filling out an action alert or signing up to join our advocacy network. We were overwhelmed by your enthusiasm!
- See also: WJLA, Washington's local ABC news affiliate, covered CureFest here.
Children's Cause was honored to take part in so many terrific events this month, and we thank our partners and colleagues in the childhood cancer community for demonstrating such a robust spirit of collaboration and dedication. We are inspired and energized to build upon this month's momentum in pursuit of our mission of advancing research for children with cancer and the nation's 380,000 childhood cancer survivors.