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Action Days 2018

Action Days 2018

2017_0502St.Baldrick___sFoundation_0315WASHINGTON, D.C. – APRIL 23rd – 24th, 2018

CLICK HERE or the button below to REGISTER:


You’re invited to join the American Childhood Cancer Organization and the Alliance for Childhood Cancer for the 7th Annual Childhood Cancer Action Days. This two-day event in Washington brings our community together to advocate for important childhood cancer issues currently before Congress.

Your Voice Matters:
A strong showing of advocates at Action Days 2018 is more crucial than ever. We will be at a critical point in the legislative process on several key issues for children with cancer. Sharing your story in Washington this spring will ensure the voice of children with cancer is heard loud and clear!


  • Monday, April 23rd: Issues and Advocacy Training at the Washington Marriott at Metro Center Hotel (775 12th St NW, Washington, DC 20005)
  • Tuesday, April 24th: Kick-off breakfast and pre-scheduled meetings with Members of Congress and their staff on Capitol Hill
  • Registration is now open! A registration fee of $50 per family will help cover expenses, including breakfast and lunch on training day for all attendees. A limited number of scholarships will be available (see registration page). Transportation to/from Childhood Cancer Action Days is the responsibility of those attending.

Hotel Reservations:
The Alliance has a room block ($209/night) at the Washington Marriott at Metro Center Hotel for the nights of Sunday, April 22, Monday, April 23rd and Tuesday, April 24th. You may make reservations by calling 1-800-393-2510 and mentioning “Childhood Cancer Action Days”; or by using the online booking link. We recommend you reserve your room early as the room block may reach capacity!


Questions? Please contact

About the Alliance for Childhood Cancer:
Founded in 2001, the Alliance for Childhood Cancer is a forum of over thirty national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington, DC to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer. Read More…

On behalf of the American Childhood Cancer Organization and the Alliance for Childhood Cancer, we look forward to seeing you in Washington, DC in April.

International Childhood Cancer Day 2018

Advancing Cures, Transforming Care, Instilling Hope

Hope Hands ICCD 2018_ FB Image LR copyFOR IMMEDIATE RELEASE – February 15, 2018 – Beltsville, MD – (ICCD) is celebrated around the world each year on February 15th. Originally commemorated in 2002, ICCD is day founded by Childhood Cancer International (CCI), a global network of 188-member organizations in 96 countries. Childhood Cancer International, along with the American Childhood Cancer Organization (ACCO), is committed to working collaboratively towards advancing cures, transforming care, and instilling hope for all children and adolescents diagnosed with cancer in the world, wherever they may live.

Sadly, childhood cancer continues to be the leading cause of non-communicable related death in children throughout the world. Globally, more than 300,000 children are diagnosed with cancer each year, including nearly 16,000 in the United States. Approximately 80 percent of our world’s children with cancer live in low-middle-income countries (LMICs) where more than 80 percent of these children die of their disease. In developed countries like the United States, Canada, the United Kingdom, Japan and others, more than 80 percent of children survive cancer with hope to live productive and meaningful lives.

The global coalition believes all children deserve hope for a cure – no matter where they live – not more excuses. We can no longer sweep this issue “under the rug.” Children are the future of our country and our world. Their vitality is the heartbeat of the world, a shared passion that can unite us because our future as a global community depends on it. Ruth Hoffman, CEO of ACCO as well as President of CCI says, “ACCO is so proud to provide the U.S. based voice in advocating for all children, no matter where they live.”

In the United States events will be taking place across the country commemorating the day, including an event in Kentucky in which Governor Matt Bevin will be speaking at a rally celebrating first time state level funding for childhood cancer research. Specially designed t-shirts including over 7,000 names of children diagnosed with cancer have also been sold across the country in their honor and memory.

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer and is dedicated to shaping policy, supporting research, raising awareness, and providing educational resources and innovative programs to children with cancer, survivors, and their families. For more information please visit

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FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Jamie Ennis Bloyd, Director of Government Relations and External Affairs, American Childhood Cancer Organization at 859-948-4626 or Ruth Hoffman, CEO, American Childhood Cancer Organization/President of Childhood Cancer International at 202-262-9949.

Historical Funding for Pediatric Cancer

Historical Funding for Pediatric Cancer Research Included in Governor Bevin’s Proposed Budget

26904072_10155537258152955_2180565015435166290_nFOR IMMEDIATE RELEASE – January 21, 2018 – Frankfort, KY – In Governor Matt Bevin’s budget, and filed as House Bill 200 on Wednesday, a historical $5 million dollars has been proposed for innovative childhood cancer research for Kentucky children battling cancer. This is the first time a Kentucky Governor has included a specific appropriation for pediatric cancer research. With $2.4 million in matching funds from local universities, the total amount for childhood cancer research in the upcoming biennium will be $7.4 million.

Despite childhood cancer being the number one cause of death by disease in the United States, research funding specifically for childhood cancer is less than four percent of all national cancer funding. In the last 3 biennium Kentucky state budgets over $15 million dollars[i] has been allocated to adult cancer research for lung, colon, breast, ovarian, and cervical cancer. Although adult cancer research is imperative, it is not widely known that adult cancer research does not translate to improved outcomes for children. Children are not small adults and adult based cancer research or treatments are not effective for addressing childhood cancer because they often originate in different parts of the body and have different molecular targets than adult cancer.

The Kentucky Pediatric Cancer Research Trust Fund and Kentucky Pediatric Cancer Foundation, joined by the American Childhood Cancer Organization (the nation’s largest grassroots awareness and advocacy organization dedicated to childhood cancer), have been working to raise awareness about the need for children diagnosed with cancer to have equal access to life-saving research. Jamie Bloyd, President of the Kentucky Pediatric Cancer Research Trust Fund and Director of Government Relations and External Affairs for the American Childhood Cancer Organization says, “Federal funding for childhood cancer research specifically remains devastatingly low. States must take an active role in funding while also partnering with non-profit organizations and the corporate community to fill the gap. I am so proud our state is stepping up as one of the first in the country to fund childhood cancer research. I hope every state in the country follows suit.”

The Trust Fund proposals emphasize compassionate innovation as well as collaboration with the state’s two Children’s Oncology Group hospitals. Lars Wagner, Chief of Pediatric Hematology/Oncology at the University of Kentucky states, “This is an exciting time for children as the state prioritizes research to help address the number one cause of pediatric deaths from disease.” Ashok Raj, MD, Chief of Pediatric Hematology/Oncology for the University of Louisville and Norton Children’s Hospital says, “This is the single largest initiative for childhood cancer ever in Kentucky. I believe where you live should not determine how your child fights cancer.” Currently Kentucky children diagnosed with cancer are limited in clinical trials and sometimes must travel out of state – even across the country – to have access to the latest in scientific advancements. Current proposals emphasize immunology, cellular and molecular therapy and more targeted genomic based treatment with less toxicity.

The Kentucky Pediatric Cancer Research Trust Fund says that of particular concern is the very alarming rate of pediatric brain tumors found in 40 counties in Eastern Kentucky. In a contiguous 40 county area there is a 42% rate increase of pediatric brain tumors compared to the same age-adjusted population in the rest of the United States. Pediatric brain tumors are now the number one cause of pediatric cancer death having recently surpassed leukemia[ii].

Research proposals also include expansion of Adolescent and Young Adult Cancer programs at each university. This segment of the childhood cancer patient population has the lowest enrollment in clinical trials – less than 10 percent – of any cancer population under 70 years of age. While overall mortality has improved for childhood cancer, outcomes in this age group have remained stagnant over the past 30 years. Dr. Wagner says, “We are eager to try to expand comprehensive care to Kentucky’s adolescents and young adults with cancer, and give them opportunities to engage in cutting edge clinical trials.”

Along with Governor Bevin, Senator Chris McDaniel and Senator Max Wise have been instrumental leaders in raising awareness about the need for childhood cancer research. Senator Wise shares, “I am beyond ecstatic not only as a legislator but also as a cancer dad to see the commitment that Governor Bevin and his Cabinet are willing to dedicate to pediatric cancer research. The best way to improve childhood cancer is to team up with our state’s two pediatric oncology centers for research and collaboration. This is truly remarkable to see and a testament to all individuals who have worked so hard for this.”

To learn more about the KY Pediatric Cancer Research Trust Fund, KY Pediatric Cancer Foundation, and the Why Not Kids effort please visit To learn more about the American Childhood Cancer Organization visit

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The Kentucky Pediatric Cancer Research Trust Fund was established by Senate Bill 82, sponsored by Senator Max Wise, in the 2015 legislative session. The Kentucky Pediatric Cancer Foundation was established in 2017 to mirror the work of the Trust Fund but allow individuals and businesses to make a tax-deductible contribution to support childhood cancer awareness and research for Kentucky children battling cancer.

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Jamie Ennis Bloyd, President of the KY Pediatric Cancer Research Trust Fund and Director of Government Relations and External Affairs, American Childhood Cancer Organization at or 859-948-4626.

[i] Information based on 2016 RS HB 303, 2014 RS HB 235, 2012 RS HB 265 and provided by LRC Appropriations and Revenue staff on 7/19/2017

[ii] Kentucky Cancer Registry, Age-Adjusted Childhood Cancer Incidence Rates, Central Nervous System, 2010-2014. US Compared to non-Appalachian and Appalachian Kentucky – all rates per 1,000,000 and p < .05.