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- Thankful and Fearful
- Every 2 minutes?
- Jace Ward’s Friends Can’t Wait
- Think about others
- Collaboration to Cure Medulloblastoma
- Two Little Words
- Turn Away… You may not want to hear this
- Cord Blood, a life line
- CAVATICA Genomics Data Sharing
- The Cancer Moonshot: Are Our Kids Stepping on the Moon Too?
- Broken Trust
- Fly Me to the Moon
- I Gladly Spoke Up for Kids With Cancer Today
- A 10 year old, Speaking from Experience
- Bereavement Meeting
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Missing Kylie by Mark Myers
Better Angels by Sadie Keller and Michael McCaul
The Truth 365 VideoIf you have not had a child suffer from cancer, you must watch this video to get the real picture of what it is like. It takes only 8 minutes, but it will be the best 8 minutes you will spend in order to understand what is happening to our kids and what we can do about it.
Click photo below to see The Truth365 Video
Tag Archives: childhood cancer
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 Leave a comment
Every 2 minutes?
In our world, when something is considered to be rare, it usually denotes that it has value. Everyone would agree that the Hope Diamond and Leonardo De Vinci’s Mona Lisa, painted in the 16th century, is rare and very valuable. … Continue reading
Why is it important for the teams, drivers and fans of the motorsports racing communities such as NASCAR, NHRA, IndyCar, WoO, IMSA and others to display “Gold in September?” Because motorsports races are, as a whole, the No. 1 spectator … Continue reading
Posted in Cancer, Childhood Cancer, NASCAR, NHRA, Pediatric Cancer, Rare Disease, Sprint Cup, World of Outlaws Tagged ACS, acute lymphoblastic leukemia, Aflac, American Cancer Society, Atlanta 500, Bojangles Southern 500, breast cancer, Camping World, Carl Edwards, Chevrolet, Chevy, Chicago, Chicagoland, childhood cancer, Darlington, Darlington 500, Ford, Greg Puryear, IndyCar, Motorsports Go Gold, NASCAR, New Hampshire, NHRA, Race, Race Track, Richmond, Richmond International Speedway, Sprint Cup, Team Chevy, Toyota, WoO, Xfinity 8 Comments
Dear American Cancer Society
Dear American Cancer Society, Good evening. I have always been appreciative of the work and research that the American Cancer Society funds. While I have always researched the organizations I support, it was not until recently that I decided to … 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
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 Leave a comment
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 Leave a comment
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 3 Comments
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 Leave a comment
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
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