Advocacy e-Bulletin to Strengthen our Community

American Childhood Cancer Organization 

September 2011


Childhood Cancer Caucus
Operation Creating Hope
Fighting the U.S. Drug Shortage
Childhood Cancer as an NCD
Myeloid Leukemias


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Welcome. This September 2011 edition of "The Grassroots" highlights advocacy initiatives that we as the grassroots voice of childhood cancer can engage in from our own home. During the month of September, individuals and organizations across the U.S. work to increase awareness of childhood cancer. Our patient population is small in comparison to other cancer populations. That makes it even more important that we all do our part to raise awareness of September as Childhood Cancer Awareness month. It also makes it even more important that all of us unite and let our voice be heard throughout the year on the issues that impact this disease.

As the leading grassroots organization representing the voice of the families of children with cancer, there has never been a better time for us to unite our voice about the issues highlighted in the articles below. We need to let our Members of Congress know how drug shortages in our country will impact cures for our children. We need to let our Members of Congress know that we want them to support the Creating Hope Act so that there is more incentive for drug manufacturers to produce new treatments. We need to let our state cancer plan committees know that we will not sit by quietly in those states where childhood cancer is not included in cancer control strategies.

In addition, ACCO is providing an opportunity for those individuals who want to become even more active. We are inviting interested individuals who are passionate about this cause to become State Advocacy Leaders of a new initiative called "Operation Creating Hope." We look forward to building this strong advocacy leadership together. As Margaret Mead said, "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."


Ruth I Hoffman MPH, Executive Director


Congressional Childhood Cancer Caucus

Are your legislators members?


As ACCO families, we ask that you please contact your U.S. House Representative and their staff to encourage them to attend. Also, if your representative is not a member of the Congressional Childhood Cancer Caucus, please encourage them to become a member so that they can be better equipped to advocate on behalf of this cause that has personally impacted your family.


Video message from Senators McCaul and Van Hollen

Operation "Creating Hope"

Building Awareness and Promoting Advocacy on a Local Level.


In the spirit of our founders, The American Childhood Cancer Organization is partnering with Kids v Cancer ( to identify approximately 5 to 10 articulate and dedicated "Advocacy Leaders" who are ACCO members and who would like to engage and provide local leadership on childhood cancer advocacy initiatives. 


America's Drug Shortage and How YOU can Help!


The American Childhood Cancer Organization is a member organization of the National Coalition for Cancer Research (NCCR). A recent meeting of this umbrella group was focused on the increasing crisis to cancer care and clinical trial research as a result of critical drug shortages in the U.S. As the largest grassroots organization representing children with cancer and their families, it is important that our voice be heard on this issue. 


Childhood Cancer as a Non-Communicable Disease


ACCO and the International Confederation of Childhood Cancer Parent Organizations will highlight Childhood Cancer at the UN High-level Meeting on Non-Communicable Disease this month. The NCD Summit will focus on four of the world's most prevalent non-communicable diseases, namely, cancer, cardiovascular disease, chronic respiratory disease and diabetes, with the aim of reaching an agreement on a global strategy to address the burden of NCDs.


Myeloid Leukemias

Current and Future Approaches to Targeted and Individualized Therapies


Blood cancers (leukemias) in children and adolescents are the most frequent type of childhood cancer, and 25% of these are called myeloid malignancies. By far the most common myeloid diagnosis is acute myelogenous leukemia (AML). Additional rare types of myeloid cancer include myelodysplastic syndromes (MDS) and myeloproliferative syndromes (MPS), such as juvenile myelomonocytic leukemia (JMML) and chronic myelogenous leukemia (CML). While advances have occurred in the treatment and outcome of pediatric patients with MDS and MPS, this article will focus on past successes leading to current outcomes and challenges for patients with the most common myeloid malignancy, AML. ACCO would like to thank Robert J. Arceci, M.D., Ph.D. for submitting this article


The term "grassroots" refers to a group of people who have been impacted by a cause and who stand united behind a movement to make a difference in that cause.  As families of children with cancer we are the grassroots voice of our nations' children with cancer. In order to strengthen our grassroots community we need to be informed about policies, legislation, decisions, and opportunities that impact our children's treatment and quality of life, and advocate for better treatments for those children who have yet to be diagnosed.