Tag Archives: Congress

NIH Budget Priorities

Each decade we lose more than 27,000 children to childhood cancer, another 120,000 suffer impacts of treatments including secondary cancers. This picture has not improved much over the past 30 years and it will continue to change only incrementally, if … Continue reading

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Washington Lip Service

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 3, 2014. So far, … Continue reading

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The Exploitation of Childhood Cancer

You all remember that little government shutdown a handful of weeks back don’t you? The emotional press conferences held by members of Congress on both sides of the aisle talking about how children with cancer would not receive treatments at … Continue reading

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Lobbyist

Lobbyist… There, I said it! For me, it’s very difficult saying the “L” word. It never has felt good rolling around in my mouth, banging up against my molars and sliding out between my tight lips. I have always hated that … Continue reading

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End of Life Equality

Until we needed to enroll my daughter Alexis in a hospice program, I really had no idea how poorly we as a country manage the needs of children who face terminal diseases. Admittedly, having a conversation about children who face … Continue reading

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Bringing Us All Together – Part 4

From my earliest entree into blogging in my daughter Alexis’ journal, I learned quickly that the childhood cancer community was a very disorganized and dis-unified group of entities and individuals who all had the same ultimate goal: a cure. I always … Continue reading

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Engaging the Pharmaceutical Industry – Part 1

This is beginning of a four part series by Jonathan Agin, an attorney and well known childhood cancer advocate (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel Agin and Trevor Agin. Alexis was … Continue reading

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The Funding Conundrum for Pediatric Cancer

My grandson, at 15 months of age, was diagnosed with high risk neuroblastoma. He is a survivor.  Although, he  endured an incredible six year long journey, this story is not about him,  his family, the changes in their lives, or … Continue reading

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