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: National Cancer Institute
Kids First 2.0
Congresswoman Jennifer Wexton (D-VA-10) introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 (HR 6556) which would redirect penalties collected from pharmaceutical companies that break the law to critical rare pediatric disease research. Representatives Tom Cole (R-OK-04), Peter Welch … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults
Tagged Ellyn Miller, Foreign Corrupt Practice Act (FCPA), Gabriella Miller, Gabriella Miller Kids First Research Act, Gabriella Miller Kids First Research Act 2.0, Gus Bilirakis., Jennifer Wexton, Mark Miller, National Cancer Institute, National Institutes of Health, NIH, pediatric cancer, Peter Welch, rare disease, Smashing Walnuts, Ten-Year Pediatric Research Initiative Fund, Tom Cole, U.S. Securities and Exchange Commission (SEC)
3 Comments
Fly Me to the Moon
President Obama called for an end to cancer in his State of the Union Address to the nation this year. He tasked his own Vice President with the job and since then the buzz word “Moonshot” has offered renewed hope … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged #CancerMoonshot, breast cancer, Cancer Moon Shot, Cancer Moonshot, colon cancer, DIPG, drug development, information silos, Joe Baber, lung cancer, National Cancer Institute, NCI, President Nixon, President Obama, prostate cancer, State of the Union, Vice President Joe Biden, War on Cancer, White House
2 Comments
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
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
#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
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
My Calling
I came into the childhood cancer community in 2013 as a member of the “general public”, having no personal connection to a child with cancer. My journey is different but not without appreciation for what cancer is and how devastating … Continue reading
Want to Make a Difference?
Maybe, I am a little old-fashioned with my “mug shot” and in a few other ways, like this one: It is so amazing to me that in today’s “connected” world, there are so many people who you will work closely … Continue reading
30% Funding Cuts
Just weeks before she died of a brain tumor, ten-year-old Gabriella Miller put it best. When asked what message she would give to the nation’s political leaders about the need for children’s cancer research, she responded in a YouTube video … Continue reading
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
7 Comments
Turn Foreign Aid into Cures for Cancer
In 2011, the United States spent $49.5 billion on foreign aid ( $17.8 billion in military assistance and $31.7 billion economic assistance) . Foreign aid has been a hot topic ever since our country slipped into recession in 2008. On … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged DIPG, foreign aid, HIV/AIDS, Joe Baber, medulloblastoma, National Cancer Institute, NCI, neuroblastoma
1 Comment
Let’s Push Buttons
Would you believe?: 96% of all clothing sold is for adults. 96% of all breakfast cereals are consumed by adults. 96% of all bicycle helmets are worn by adults. 96% of all cancer research conducted by the National Cancer Institute … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged American Cancer Society, FDA, gold ribbon, Joe Baber, National Cancer Institute, NCI
4 Comments
Advocacy and Direction
Lately, I have wondered whether or not the childhood cancer community is on the right track overall. By this, I mean, is the direction of the community in terms of raising money, awareness and the manner of funding research the … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged advocate, ALL, DIPG, HR 2019, Jonathan Agin, Kids First Research Act, Lobbyist, National Cancer Institute
2 Comments
We Must Stop Turning Our Backs on Children’s Cancer
When doctors told my wife and I that our soccer-playing, Harry Potter-reading 7-year-old daughter Olivia had cancer, we were struck with panic, dread and challenges we never could have imagined. And once we overcame the shock, we were stunned to … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Capitol Hill, Childhood Action Day, chronic side effects, Conquer Childhood Cancer Act, d d, federal budget, Food and Drug Administration, heart failure, life-theatening illnesses, National Cancer Institute, pharmaceutical industry, prostate cancer, secondary cancers, Stephen Crowley, therapies
1 Comment
Welcome!
Welcome to Four Square Clobbers Cancer! Four-Square Clobbers Cancer is a conversational blog that is dedicated to improving the outcomes of children, adolescents, and young adults who are being treated or have been treated for cancer. The goal is to inform, … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged acute lymphoblastic leukemia, adolescents, American Childhood Cancer Organization, asthma, AYA, blood cancer, BMT, bone marrow transplant, Brain Tumor, breast, cardiac arrest, chemotherapy, cognitive deficit disorder, Dana-Farber Cancer Institute, depression, die, disabling chronic healt problems, Ewings sarcoma, fatigue, genomic, gilomas, hearing loss, heart transplant, hospital, immune deficiency disorder, infertility, Kennedy Bougher, kidney transplant, Leukemia, life-theatening, lymphoma, medulloblastoma, memory issues, National Cancer Institute, NCI, neuroblastoma, osteosarcoma, PAC2, People Against Childhood Cancer, precision medicine, radiation, rhabdomyosarcoma, sarcoma, sequencing, solid tumor, survivor, toxic, tumor, vision problems, Wilms tumor, young adults
1 Comment
Survivor
Although everyone in our Childhood Cancer group is trying to survive, this contest is not like the TV game show where everyone is reasonably healthy and one lucky person wins a million dollars if they are the lone survivor. Every … Continue reading
Posted in Childhood Cancer, Pediatric Cancer, Uncategorized
Tagged acute lymphoblastic leukemia, Acute Myeloid Leukemia, adolescents, American Cancer Society, American Childhood Cancer Organization, asthma, Astrocytoma, AYA, blood cancer, BMT, bone marrow transplant, bone tumors, Brain Tumor, breast, cardiac arrest, chemotherapy, cognitive deficit disorder, Dana-Farber Cancer Institute, depression, die, disabling chronic healt problems, Ependymoma, Ewings sarcoma, fatigue, genomic, gilomas, hearing loss, heart transplant, Hepatic, Hodgkin, hospital, immune deficiency disorder, infertility, Kennedy Bougher, kidney transplant, Leukemia, life-theatening, lymphoma, medulloblastoma, Melanoma, memory issues, National Cancer Institute, NCI, Neoplasms, neuroblastoma, NonHodgen, osteosarcoma, Ovarian germ cell, PAC2, People Against Childhood Cancer, precision medicine, radiation, Retinoblastoma, rhabdomyosarcoma, sarcoma, sequencing, solid tumor, survivor, Testicular germ cell, Thyroid carcinoma, toxic, tumor, vision problems, Wilms tumor, young adults
4 Comments
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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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
