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: Jonathan Agin
The Small Hero Amongst Us All
Editor’s Note: Jonathan Agin penned this piece two years ago for the Huffington Post. The only things that have changed since then are the additional faces of the small heroes each year. Each year, toward the middle of December, there … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Amy Winehouse, hero, Huffington Post, Jonathan Agin
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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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Congress, Jonathan Agin, NIH
3 Comments
Friends Don’t Let Friends Relay
Editor’s note: Little has changed since Jonathan Agin penned this article for the Huffington Post in February, 2013. There are many amazing charitable organizations focused upon cancer research and support. Most of us can rattle off the big ones … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged ACS, American Cancer Society, John R. Seffrin, Jonathan Agin
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Finding Your Footprints
Have you ever tried to walk behind someone in the deep snow and step right in their footprints? As you take each step, you may or may not hit each plant right in the already trodden snow. And then, coming … Continue reading
Advocacy and Direction
Lately, I have wondered whether or not the childhood cancer community is on the right track overall. By this, I mean, is the direction of the community in terms of raising money, awareness and the manner of funding research the … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged advocate, ALL, DIPG, HR 2019, Jonathan Agin, Kids First Research Act, Lobbyist, National Cancer Institute
2 Comments
Mr. President, Did We Miss Your Call?
President Obama, perhaps you recall that back in January 2013 I reached out to you to talk about three specific small asks for the childhood cancer community. I know that you have had a lot on your plate recently. For obvious … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Africa, gold, Jonathan Agin, NCI, President Obama, Whitehouse
1 Comment
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
Adrift in the Waters of Childhood Cancer-Arguing to Change the Standard of Care
April 11, 2008 will always remain etched in my memory for one simple reason. It is the day that we heard the words “your daughter has cancer.” They are four of the worst words that a parent could ever imagine … Continue reading
The Patient Choice Act – Providing Choice Instead of Death
I suppose I never truly realized how little choice we have individually with respect to selecting the drugs and treatments we as Americans pursue for own health. This never personally impacted me until the diagnosis of my two year old … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged HR: 2090, Jonathan Agin, Josh Hardy
2 Comments
Epilogue -Childhood Cancer, My Road Map Series
Five weeks ago I set out to create what I think is part of the road map for the issues facing the fight against childhood cancer, and the areas I feel could provide gains on this road. The truth is, … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged childhood cancer, funding, Jonathan Agin
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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
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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The FDA and Childhood Cancer – Part 2
This is part 2 of the Jonathan Agin series, “Childhood Cancer – My Road Map” Being sent to an emergency room to have a CT scan performed on your two-year-old child is frightening. Being brought into a small cramped room … Continue reading
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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Four-Square Clobbers Cancer 