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
Monkey in My Chair
Category Archives: Cancer
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
One Son and Two Cancers: A journey, a lesson, a mission
2/9/2020 Update: In September 2019 , Steven was recently diagnosed with two more cancers (now, the total is four) and is now fighting Renal Cell Carcinoma and a Soft Tissue Sarcoma. He is currently in treatment. This story will introduce … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Acute Myelogenous Leukemia, Adolescent, AML, Angie Giallourakis, AYA, Bone Marrow Registry, Cleveland State University, Greek Orthodox, GVHD, immune suppressants, Mohammed Ali, osteosarcoma, Planter's Peanuts, psychotropic, Sonny Liston, Stage 4, Stem Cell, transplant, Young Adult
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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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Give me a big bottle of that stuff!
About this time 12 years ago, I was working on forming a reunion of people who had worked at Roses Stores, a southeastern chain of discount stores. Out of the blue, I walked back into Marion, VA, a wonderful small … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged childhood cancer, Jaws of Life, Joe Baber, Marion, Roses, Virginia
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Effective Public Speaking 101
Want to spread the word about how rare childhood cancer is? Even if you are afraid to talk in front of a group of people, you can do this without giving a big speech! This is how to give an … Continue reading
We are Soldiers of Cancer
Behind every soldier there is a family who makes sacrifices so their spouse, father or mother can serve our great country. Ryan’s family is one such family. Even in the shadow of pain and adversity, they are giving back to … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Acute Myeloid Leukemia, AML, bone marrow transplant, chemo, Children's National, family, four square clobbers cancer, Mikelle G. Raffel, military families, pediatric cancer, PICU, Ryan's Battle Buddies, soldiers, Walter Reed, wounded warrior
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Tissue Donation – The last thing any parent wants to give
Progress, unfortunately is sometimes forged from the fires of pain mixed with strength, courage, passion and determination. Nancy Goodman has such a story. Nancy made a donation that no parent ever wants to give. “My son, Jacob, was a beautiful, … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged autopsy, Brain cancer, Congressional Childhood Cancer Caucas, Creating Hope Act, DIPG, donation, Dylan Jewett, FDA, four square clobbers cancer, Hope Act, Jacob Goodman, Joe Baber, medulloblastoma, Morquio A syndrome, Nancy Goodman, President Obama, Rare Pediatric Disease Priority Review Voucher, tissue, tumor, Vimizim
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Cancer Drug’s Valley of Death – Where is it, What is it?
To truly understand the problems with development of drugs specific to childhood cancer, and rare disease in general, examine the FDA’s Therapeutic Development Pipeline below. The pipeline represents the normal development of an average drug. The average successful drug will … Continue reading
Four-Square Clobbers Cancer 