51 Childhood Cancer organizations strong and growing!
Missing Kylie by Mark Myers
" Never capitalize the word, "cancer." It does not deserve it. " Carson Leslie, 17
Better Angels by Sadie Keller and Michael McCaul
Better Angels by Sadie Keller and Rep. Michael McCaul
How my daughter embraced life with cancer as an unexpected adventure. Catie was just one of those unique people who had the ability to touch people and make them live a little more splendidly. This is Catie's story - and how she changed the world one brilliant moment at a time.
Click photo below to see The Truth365 Video
The book, "Grace" by Melinda Marchiano
Provide Chemo Ducks for Kids
Great for young school age kids
Tag Archives: Congress
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
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Congress, Jonathan Agin, NIH
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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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Alex's Lemonade Stand, Carolyn Price Walker Conquer Childhood Cancer Act of 2008, CHOP, Congress, Defense Department, DOD, Dr. Phil, Gabriella Miller Kids First Research Act, Joe Baber, Jonathan Agin, Lobbyist, Lone Ranger, National Association of Children's Hospitals, National Breast Cancer Coaliton, Nationwide Children's Hospital, Ronan Thompson, St. Baldricks, Susan G Komen for the Cure
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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
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Action, awareness National Cancer Institute, childhood cancer, Collaboration, community, Congress, Dr. Harold Varmus, international unity, Jonathan Agin, legislative agendas, NCI, research, unity
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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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged childhood specific, compounds, Congress, Creating Hope Act, DIPG, DIPG Collaborative, FDA, Food and Drug Administration, harold V arms, Jonathan Agin, lobby, M.D., Nancy Goodman, National Cancer Institute, pediatric cancer drugs, pharmaceutical companies, profit model
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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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Best Pediatric Exclusivity Provision, BPCA, Carolyn Pryce Walker, CDC, childhood cancer, Congress, Deborah Pryce, Dr. Jessica Boklan, FDA, Jack Reed, Joe Baber, Michael McCaul, NCI, neuroblastoma, Norm Coleman
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Four-Square Clobbers Cancer 