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By Stacia Wagner/Marianne Bergman
Wednesday, June 13, 2012

On June 4th, I was asked by the Children's Brain Tumor Foundation to represent them at the first annual Alliance for Childhood Cancer Lobby Days.  The Alliance represents more than twenty national patient advocacy groups and professional medical and scientific organizationswho have come together for the purpose of bringing pediatric cancer to the attention of our elected representatives in Washington DC. 

The first day of the conference was spent preparing over 250 families and advocates for the visits to Capitol Hill the next day. This was done by presenting guest speakers such as a grandfather of a pediatric cancer patient who was a former staff person for a Congressman. In addition, there was a Congressional Legislative Aide.  They explained the advocacy process and shared tips on how to have a successful meeting.  The group was also given some “ASKS” related to important legislation impacting pediatric cancer patients and survivors.  We discussed the “ASKS” at our meetings the next day with Senators, Representatives and Legislative Aides.  

What we were asking for was:

  1. To support the Pediatric Cancer Survivorship Act, which addresses the needs if the survivors after their treatment is done
  2. Develop and preserve access to pediatric drug treatments, including reauthorization of the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA)
  3. Join the Pediatric Cancer Caucus

On June 5th, we all set out for our meetings. The children who accompanied us to the visits were either currently in treatment or had finished their treatment. All of them wore capes. They did so because they are, in fact, super heroes. 

It is not too late to ask your legislators for the above three points!You can support this effort by sending a message to your members of Congress (and asking your family, friends, and colleagues to do the same).  Send a message through the websites of the Children’s Cause for Cancer Advocacy, Curesearch for Children’s Cancer, or the St. Baldrick’s Foundation.

Together, we can all make a difference!

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