Christopher Winters, President, National Children’s Cancer Consortium
February 9, 2017
Our Dearest Pediatric Cancer Community Heroes, Families, Fellow Advocates, Decision Makers, and our Friends and Families:
Today, we are honored to announce the formation of a properly licensed non-profit legislative advocacy organization dedicated to taking the war on pediatric cancer to our state legislatures and local municipal governments.
This announcement is filled with humility and a deep respect for the quarter-million children and their families that are diagnosed each year in the United States with a form of pediatric cancer. It is with great reverence and honor to all the children we have lost to this epidemic that we announce the formation of the National Children’s Cancer Consortium (NC3).
Merriam-Webster defines a Consortium as an agreement, combination, or group (as of companies) formed to undertake an enterprise beyond the resources of any one member.
When we decided to launch this effort in the fall of 2015, we realized there are hundreds, if not thousands, of organizations fighting against pediatric cancer. NC3 efforts are not to take away from any one individual or organizations’ efforts, whether in Washington DC on the grand national stage, or in a more localized effort such as in a small town in Pennsylvania, Maine, Florida, Minnesota or West Virginia.
Our strategic plan is to look at working cooperatively with local governments to address needs of families that only local government entities can handle or respond to, to help children fighting pediatric cancer, and raise awareness of this epidemic. NC3 operations will be within the halls of our state capitols to address state level issues such as disparity in care, palliative treatment concerns, chemo parity, and awareness. We will also develop new state research and development efforts utilizing dedicated institutions in cooperation with public and private funding partnerships.
To accomplish this, NC3 will work with all the organizations already established and operational across the greatest nation on earth; a consortium that addresses this epidemic from the small family in Palo Alto, CA to the incredible efforts of organizations such as The Truth 365, CureSearch on the national level in DC, and everywhere in between.
Over the last 18 months, this group of pediatric cancer parents and advocates began the process of actively reviewing what was happening within the pediatric cancer community, and NC3 was born. NC3 founders spoke to the children, parents, families, advocates, medical professionals, social workers, and researchers to determine what is causing delays in formal, significant action in the fight against childhood cancers. NtlC3info@gmail.com
NC3 realized that what should bind us and make us stronger as a community was actually hurting us a community. Our community is fractionalized, and while some actions have caused us to focus our efforts on important legislative remedies like the Star Act in Washington, the political climate and divisiveness morasses and halts those important changes from occurring in our Nation’s Capitol.
NC3 strongly supports and has offered our full support on all efforts in Washington DC to get movement in Congress and the White House by many national level organizations. We stand behind those efforts and laud the efforts of those organizations and individuals to change the level of funding offered for pediatric cancer research from the NCI. That change MUST happen and we will stand in solidarity with all involved in the fight in Washington and offer our skills to help foster passage of properly-funded acts in Congress and signed into law by the President that benefit the pediatric cancer community.
For too long, pediatric cancer research has been funded at less than 4%, which is a dismal amount compared to the exponential increase of diagnosis worldwide. The numbers are alarming, discouraging, and frustrating, yet we are seeing an increase in awareness and people taking a stand for the kids. We are seeing communities unite, coming together for a family as they struggle under the weight of hearing the words “your child has cancer.”
We see private businesses and organizations coming together to stand behind and support families as their child struggles while undergoing treatment. We watch as families and friends come together to lay a child to rest.
Yet, with all those great examples of the power of human kindness and unconditional love for a child, the pediatric cancer epidemic rolls on, claiming young innocent lives without hesitation.
Pediatric cancer pulls no punches. It does not care about one’s financial status, faith, skin color, or place of residence. It just destroys lives. It destroys families. It destroys hope.
To combat this scourge, we must change the conversation. We must change our tactics. We must change how we approach this battle. To win the war, sometimes strategy needs to be undertaken that shakes up the status quo and forces us to step back and reexamine strategic operations. NC3 was formed to work with all entities at all levels of government and the private sector to foster cooperation, take on this epidemic, and beat it.
NC3 has already started the fight in key states across the country. Legislation modeled after bills sponsored and introduced in Pennsylvania has been shared with state legislators and national state government organizations.
NC3 is taking the fight to our state capitols not only to raise awareness, but also to help our state officials influence their colleagues in Washington and support the national efforts by our allies in DC.
Over the next few weeks, legislation drafted by NC3 will be proposed across the country. Through our team efforts, other state-specific pediatric cancer legislation is being drafted and developed.
NC3 is looking to work alongside the pediatric cancer community to bring change to the war on pediatric cancer. It is time for professionalism. It is time for united action. It is time to take our children’s lives back. It is time… for the War on 4. Please join us and help us beat pediatric cancer.
The National Children’s Cancer Consortium Board of Directors:
Christopher M. Winters, President Ronnie Duvall, Executive Vice President Kelly Rowan Wymer, Treasurer Amanda Denniston, Secretary William T Rush, Esq. Solicitor Abraham Cepeda, Esq. Solicitor to the President
Board of Directors: Chrissy Santa Maria, Vice President of Research and Security
Tabaitha Steward, Vice President of Organizational Outreach
Jennifer Shady Kratzer, Vice President of Family Advocacy
Sara Weinhold, Vice President of State Operations
Heather Winters, Vice President of Municipal Operations
Bruce Doucette, Pastor
Maria Smathers, Director
Lou Kinkle, Director
NC3: 327 Lincoln Dr. Wernersville, PA 19565 / (610)790-9051