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
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: Joe Baber
Mesotheli-WHAT?
Mesothelioma is normally not a cancer one hears about in the childhood cancer community. That may be because, in most cases, because of the long latency period, it is not normally detected until the child becomes an adult. Today, children in older schools may … Continue reading
Together
Our community is built of many similar, yet different and diverse organizations. Collectively, we are looking for a cure for childhood cancer. No one has actually been able to say with absolute certainty exactly how many organizations actually exist in … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged CAC2, Coalition for Childhood Cancer, Joe Baber
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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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Rachel’s Place – Surviving Medulloblastoma
Today, “Rachel’s Place” is with her family somewhere between Hope and Peace. She actually lives near Bel Air, Maryland, but her real place of comfort and security is anywhere she and her family are together. Each year during Brain … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Brain Tumor, Cerebellum, Dr. Ben Carson, facial sensory loss, headache, infratentorial primitive neuroectodermal, Joe Baber, Johns Hopkins, malignant, medulloblastoma, PNET, positional dizziness, Rachel Riskin, survivor, tumor
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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 last year, 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 town … 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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I’ll take second…
Lane Goodwin was known around the world for his struggle and the thumbs up attitude he displayed in his fight against cancer. Unfortunately, Lane lost his battle in October of 2012. When he died, he was only 13, and he … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Berry, childhood cancer, Earl Sebastian, Joe Baber, Kentucky, KY, Lane goodwin, petition, survivor
3 Comments
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
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
Is Childhood Cancer Rare?
Generally speaking, when people talk about cancers, they like to quote the numbers. Sadly, some point to the 36 kids a day diagnosed and 2,400 deaths per year and say they are small numbers compared to the adults diagnosed. Some … Continue reading
Searching for Gold
In the 1800’s, thousands flocked to the California hills for the great gold rush. Today, there’s a gold rush occurring in Peru where, each day, 40,000 or more people with pickaxes and crude hydraulic drills work the shaft mines of … Continue reading
