TogetherOur community is built of many similar, yet different and diverse organizations. Collectively, we are looking for a cure for childhood cancer. No one has actually been able to say with absolute certainty exactly how many organizations actually exist in our community.  Many, if not most of our organizations were formed by grieving parents to honor a child who fought and lost their battle against cancer, and who wanted to make sure no other child has to lose their life to this terrible disease. Other organizations were formed by parents whose child survived, and who wanted to give back by helping in the fight to improve treatment and save lives. Many groups are formal organizations and tax exempt 501-C3 foundations, while many are informal and not yet certified as tax exempt by the IRS.  We range in size from a single advocate to very large national organizations and every imaginable size in between. Together, we cover every type of childhood cancer known to man.  While some collect only hundreds or thousands of dollars,  others collect millions, but together we collect a huge amount of donations and together, we fund a large amount of research. Together, we help a considerable number of families to stay afloat during their child’s battle with cancer.  Together, we try to bring a smile and a brighter day to every childhood cancer patient. Together, we do all of these things.

When we think of our community, “together” may be how we see ourselves, but the truth is that most people only see us as individual legoRedorganizations and certainly not much more than what our particular  organization may represent.   There is no central visualization  to them that islegoyellow representative of the entire community or its problems.  Given the fact that most people have heard or believe that childhood cancer is rare, it is very difficult for the average person to comprehend  exactly how big our community is.   Let’s face it, no matter how hard we try, we rarely get the message across of how big the childhood cancer community is collectively or how big a problem cancer is to our nation’s children, adolescents and young adults.  In comparison, all you have to do is mention legostackSusan G. Komen and you instantly feel the enormity of the breast cancer movement. We have little in our community that will offer the same effect on people.  As large and successful as they are and have been, and despite the great amount of good they do, St. Baldrick’s and Alex’s Lemonade Stand together don’t quite get the same respect. Considering this, it’s easy to reason why people equate pink with breast cancer so easily, but really don’t have an idea of what gold represents.

umbrellaLegoThere are more than a dozen types of childhood cancer and we have individuals, organizations and foundations for just about each and every one of them.  Breast cancer, on the other hand, is considered as a cancer in and of itself, therefore more people easily unite under their single cause.  It’s not that way with childhood cancer, but, like breast cancer, we must find a way to put all 42 of our cancers together under a single umbrella of recognition. Without changing the individual organizations under it, the umbrella could represent the cause of childhood cancer and help to get needed recognition and support from the public which would also help us gain the legislative leverage that we so desperately need. With public support comparable to breast cancer, we may also have better luck when it comes to addressing funding  for research by government and the National Cancer Institute.

On July 19, 2013 an organization that could be our “umbrella” and help to advance the cause of childhood cancer was formed in Washington, DC. More than 40 organizations came together to build a huge umbrella organization that will be known as the Coalition Against Childhood Cancer.  Our childhood cancer community needs to come together and give our time and efforts to building an organization that will allow us to gain the support of the American people in our fight to conquer cancer.  This could be a defining moment for our community.  We owe it to our children and children everywhere to at least take a look and to see if we can make this work. Will it satisfy everyone’s needs? Probably not everyone’s needs, but it should satisfy most. Since it is a new, uncharted organization, it will not be perfect in the beginning, but if we all work at it, we can improve on it as it grows.  We owe it to each other and to children everywhere to strengthen our ties and together, under the same banner,  forge a battle never seen before in childhood cancer.


To get complete information, visit the  Coalition Against Childhood Cancer Website 


Author: Joe Baber

Editor’s Note: The Coalition Against Childhood Cancer, now 59 organizations strong and growing, will host it’s first annual meeting in Washington, DC on June 25, 2014. Details can be obtained by clicking on their website above.


This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , . Bookmark the permalink.

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