ACCO Was Proud to Attend the 6th Annual Childhood Cancer Summit
ACCO Executive Director Ruth Hoffman and Congessman Michael McCaul (R-TX)
ACCO board member Greg Aune and ACCO Executive Director Ruth Hoffman were proud to attend the 6th annual Childhood Cancer Summit held Friday September 18th in the Visitor’s Center Auditorium of the U.S. Capitol Building. The Childhood Cancer Caucus is co-chaired by Congressman Michael McCaul (R-TX) and Congressman Chris Van Hollen (D-MD). ACCO’s office is located in Congressman Van Hollen’s 8th Congressional District of Maryland, so we were once again proud of our relationship with our Congressional Champion. Congressman Van Hollen thanked all in attendance for, “coming together to push forward on research and treatments for childhood cancer.” He assured the advocates in attendance that, “Progress happens when individuals work towards positive change.”
Congressman Michael McCaul opened the summit, welcoming all in attendance. His commitment to this cause was evident in his opening comments, “I chair the Homeland Security Committee and my job is to protect the American people from threat. Childhood Cancer
is the number one threat to our children.” He went on to say that he “can’t think of anything more important than saving a child’s life.” Congressman McCaul highlighted the need for more federal funding for childhood cancer as well as the need for the passing of the Childhood Cancer STAR Act (Survivorship, Treatment, Access and Research) as well as the 21st Century Cures Act. Anything short of this he considers, “unconscionable.”
ACCO Board memmber Greg Aune MD, PhD and Congessman Michael McCaul (R-TX)
Congresswoman Jackie Speier (D-CA) also highlighted the dysfunctional state of the institution and Americans being deeply troubled at Congress’ inability to get, “anything done.” She also challenged those in attendance to, “Let Congress know that they CAN do something by supporting the STAR Act and by increasing funding to the NIH.” She advised families in the room who had gone through the childhood cancer experience, “to use our grief to make change.”
Other guest and panel speakers at the Childhood Cancer Summit included: Dr. Lee Helman (NCI), Dr. Michael Link (Stanford School of Medicine), Dr. Roger Jeffs (United Therapeutics), Dr. Amy Fowler, (Dell Children’s hospital), Danielle Leach (Alliance for Childhood Cancer) and Casey and Leslie Ryan (parents of neuroblastoma survivor).
The Summit was followed by a luncheon hosted by the Alliance for Childhood Cancer. ACCO Board member Dr. Greg Aune highlighted survivorship issues through his personal story as a survivor of Hodkin’s requiring open heart surgery, as well as his perspective as a pediatric oncologist and researcher.
The luncheon was followed by the White House Briefing on Childhood Cancer. Located at the Dwight D. Eisenhower Executive Office Building all attending
were welcomed by Fae Jencks, Senior Policy Advisor for Public Engagement, WH Office of Science and Technology Policy. Speakers included Dr. Doroshaw, Acting Deputy Director of the NCI, Dr. Peter Adamson, COG Chair, Stephanie Devaney, Project Manager for the WH Precision Medicine Initiative and Adaeze Enekwechi, Associate Director of Health Programs in the Office of Management and Budget. Adaeze summarized that of the $31 Billion NIH budget of which $3 Billion is allocated to pediatric research, she noted that, “There is room for growth for pediatrics.”
Throughout the day of meetings, advocates were united in their message that childhood cancer needs to be a national priority!