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: NIH
Thankful and Fearful
Because of my grandson, Conor, a neuroblastoma survivor, I have met so many people in our childhood cancer community who want to improve the outcomes of children fighting cancer. We either have children in treatment for cancer or have children … Continue reading
Posted in Cancer, Childhood Cancer, DIPG, Pediatric Cancer, Rare Disease, Uncategorized
Tagged birth defects, Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, childhood cancer, Ellyn Miller, Gabriella Miller Kids First Pediatric Research Acr 2.0., Joe Baber, Kids First 2.0, Kids First Data Resesource Center, NCI, NIH, phenotypic datasets, S. 1521, whole genome sequencing
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Open Letter to Congress
Dear Member of Congress, As you are preparing to make decisions about 2017 funding for the National Institute of Health (NIH) please consider a few things. Childhood cancer is the #1 disease related killer of kids in the U.S. The … Continue reading
So, It Begins:
I have been actively engaged in the advocacy fight for more federal funding for childhood cancer since my first trip to Washington DC in June of 2008. This began less than 3 months after I lost my only son, Caleb, … Continue reading
Compassionate Use
You may remember the #SaveJosh news articles in the spring of 2014 where little Josh Hardy’s family mounted, as a last ditch effort, a social media campaign to get him into a clinical trial that St. Jude’s doctors said was … Continue reading
Thank You, American Cancer Society
In the past, I have been a huge critic of the American Cancer Society and in September, I wrote a very inflamed blog about all that I felt was wrong with the American Cancer Society’s (ACS) involvement with childhood cancer. … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged ACS, American Cancer Society, FDA, Joe Baber, NCI, NIH
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Palliative Care
About six years ago, the National Institutes of Health (NIH) announced it’s support for palliative care (pronounced pal-lee-uh-tiv) for adults and children suffering from serious illness. Today, 70% of Americans still do not know what it is. To be honest, for … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, young adults
Tagged American Cancer Society, Better Clinical Outcomes, Boston Children's Hospital, death, Dr. Joanne Wolfe, end of life, Get Palliatve Care .Org, hospice, Joe Baber, National Cancer Institute, National Institutes of Health, NCI, neuroblastoma, NIH, The New England Journal of Medicine
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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
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
We need more than just research
A mother noticed that her six year-old son’s eyelids were not closing normally and when he walked, he was slightly off balance. A few days later, his parents’ worst nightmare became a reality; they were told that their son has … Continue reading
Four-Square Clobbers Cancer 