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
Category Archives: Cancer
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
As Our Children Wait – Part 3
Childhood cancer has been on the rise since the 1970s, a White House task force was formed in the 1990s to look at the underlying causes of children’s health issues. Episode 1 provided an overview of the Children’s Health Act … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Children’s Health Act, Donna Carroll Carmical, Dr. Collins, GAO, Government Accountability Office, Government Performance and Results Act, GRPA, HHS, Modernization Act of 2010, National Cancer Institute, National Children’s Study, NCI, NIH, Perfomance.gov
1 Comment
As Our Children Wait – Part 2
“As Our Children Wait, Part 1” discussed the Children’s Health Act of 2000, which was passed after extensive work by a White House task force recognized concerns about children’s health. The Children’s Health Act required the National Institute of Health (NIH) … Continue reading
As Our Children Wait – Part 1
Blissfully ignorant! That was us before our grandchild Declan was diagnosed with a childhood cancer called AT/RT. On diagnosis we were told that for Declan there was no hope — no cures, treatments, protocols. We were told this particular type … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged AT/RT, Children’s Health Act of 2000, Donna Carroll Carmical, HHS, National Children’s Study, NCI, NCS, NIH
6 Comments
Why Motorsports?
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
Moving the Needle
Recently in Washington, D.C. there was a hearing to discuss the $30 billion 2016 budget requested by the National Institute of Health (NIH), these are our tax dollars at work. The largest of our childhood cancer organizations admirably raises tens … Continue reading
What Not to Say When There is Nothing to Say
Originally posted on A Generous Helping:
Recently, I was asked for advice about how to respond to the parents of a child diagnosed with cancer. Let me say from the outset that I am a dubious source whose council typically…
NIH Budget Priorities
Each decade we lose more than 27,000 children to childhood cancer, another 120,000 suffer impacts of treatments including secondary cancers. This picture has not improved much over the past 30 years and it will continue to change only incrementally, if … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged acute lymphoblastic leukemia, AIDS, ALL, Alzheimer’s research, Antimicrobial Resistance, Appropriations Committee, AT/RT, Brain initiative, chemotherapy, Congress, Declan Carmical, DIPG, Dr. Francis Collins, Dr. William Carroll, federal research dollars, Health & Human Services and Education, hearing problems, heart problems, infertility, Labor, learning disabilities, National Cancer Institute, National Institues of Healt, NCI, NIH, Precision Medicine Initiative, secondary cancers, Senate, StandUp2Cancer, stunted growth
6 Comments
Texas Proud!
Annette Leslie, Executive Director of the Carson Leslie Foundation and a Four Square Clobbers Cancer blogger, has served on The Cancer Prevention and Research Institute of Texas (CPRIT) Childhood Cancer Advisory Council since 2010 and couldn’t be more Texas Proud! … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Annette Leslie, Baylor College of Medicine, Cancer Prevention and Research Institute of Texas, Carson Leslie Foundation, CPRIT, Joe Baber, M.D. Anderson Cancer Center, Texas Tech University Health Science Center, University of Houston, University of Texas, University of Texas at San Antonio, university of Texas Southwestern Medical Center at Dallas
Leave a comment
#MoreThan4 NCI Email Exchange
The National Cancer Institute recently sent a response to an email sent to them containing a selfie and a #MoreThan4 flyer. You may have received one. Below is the NCI email and our response. Thank you for taking the time … Continue reading
Father, Daughter, Date Night
The other day I decided to take my 7 year old daughter, Bella, out on a date. I found a traveling circus that was in town and recalled how much I enjoyed the circus as a kid and thought it … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Bella, Caleb, Leukemia, Rob Whan
Leave a comment
Five year cure, …really?
Five-year relative survival rates describe the percentage of patients with cancer that are alive five years after their disease is diagnosed. Use of 5-year survival statistics is more useful in aggressive cancers that have a shorter life expectancy following diagnosis (such … Continue reading
Fixing the Faults
This summer I wrote a raw piece entitled “The Fault in Our Systems”. Our family’s efforts to get Nathalie access to immunotherapy treatment (available to adults) seemed to be going nowhere. The inequities were everywhere and the playing field was … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Bristol-Myers Squibb, Children's Oncology Group, Compassionate use, Congressional Childhood Cancer Caucus, Congressman Chris Van Hollen, Congressmen Mike McCaul, Dr. Harold Varmus, Genentech, genetic analysis, GlaxoSmithKline, Henry and Me, Johnson and Johnson, MD Anderson, Merck, Nathalie Traller, Nathan Traller, NCI, NIH, PDL, PDL1, Pediatric Cancer Advocates, pediatric MATCH Trial, St. Baldricks, Stillbrave, tumor, Vickie Traller, White House
Leave a comment
A Pair of Shoes
One day in September, after my wife Ellie and I visited a Senator in the Hart building, we met up with Ellyn Miller (Gabriella Miller’s mother) on a beautiful blue-sky morning in front of the Cannon House Building in Washington, … Continue reading
Hope
From his perspective, my then 10 year-old grandson Conor has always had a somewhat normal childhood. He lives in California, is good in school, a cool blond-headed surfer dude and a wild and radical skateboarder. In fact, I am amazed … 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
September’s Child
In my household, the month of September and the passing of Labor Day used to mean tucking away my white jeans, getting the kids settled at school and ordering Halloween costumes. After my son’s cancer diagnosis in 2013, September will … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Asha Virani, Childhood Cancer Awareness Month
1 Comment
Update: Camp Can Do
For decades, the American Cancer Society (ACS) had been funding a nationwide childhood cancer camp program. In 2013, a business decision was made to cut funding for this program in its entirety. This was at no fault of the camps, … Continue reading
