Tag Archives: NCI

Thankful and Fearful

Posted on November 23, 2022 by Team Captain

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

Fly Me to the Moon

Posted on January 25, 2016 by Team Captain

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

#MoreThan4 NCI Email Exchange

Posted on March 20, 2015 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged #MoreThan4, CCSS, Childhood Cancer Survivor Study, Children's Oncology Group, COG, National Cancer Institute, NCI, Pediatric MATCH Program, TARGET | 4 Comments

Compassionate Use

Posted on July 30, 2014 by Team Captain

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 →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Brain cancer, Compassionate use, Ellyn Miller, FDA, Grabriella Miller, Joe Baber, Nathalie Traller, NCI, NIH, pediatric diseases, Pharna, Smashing Walnuts | 4 Comments

The Fault in Our Systems

Posted on July 29, 2014 by Team Captain

by Nathan Traller, Nathalie’s father Editor’s Note: Nathan’s daughter was diagnosed with Aveolar Soft Part Sarcoma (ASPS) two years ago and he has been fighting to get her into a possible life saving clinical trial for PD1 and PDL1. Time … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged 2.0 clinical Trials, ASCO, ASPS, Aveolar Soft Part Sarcoma, Bristol-Myers Squibb, Clinical Trials, Compassionate use, FDA, Genentech Inc., genomic profile, Lung MAP trial, Merck, metastatic cancer, Nathan Traller, National Cancer Institute, National Institutes of Health, NCI, NIH, PD1, PDL1, pediatric trials, rare disease, tumor bank | 3 Comments

Thank You, American Cancer Society

Posted on March 3, 2014 by Team Captain

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 | 8 Comments

Palliative Care

Posted on January 15, 2014 by Team Captain

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

Washington Lip Service

Posted on January 13, 2014 by Team Captain

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 3, 2014. So far, … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Congress, Gabriella Miller, Laurie Orloski, NCI, pediatric cancer, Senate, Senator Bob Casey, Senator Pat Toomey, The Gabriella Miller Kids First Act | Leave a comment

Turn Foreign Aid into Cures for Cancer

Posted on January 2, 2014 by Team Captain

In 2020, the United States spent $51.05 billion on foreign aid ($11.75 billion in military assistance and $39.3 billion economic assistance) Foreign aid has been a hot topic ever since our country slipped into recession in 2008. On any given … 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

Posted on December 5, 2013 by Team Captain

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

Mr. President, Did We Miss Your Call?

Posted on July 8, 2013 by Team Captain

President Obama, perhaps you recall that back in January 2013 I reached out to you to talk about three specific small asks for the childhood cancer community. I know that you have had a lot on your plate recently. For obvious … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged Africa, gold, Jonathan Agin, NCI, President Obama, Whitehouse | 1 Comment

Bringing Us All Together – Part 4

Posted on April 10, 2013 by Team Captain

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

Welcome!

Posted on April 4, 2013 by Team Captain

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

Federal Funding for Childhood Cancer Research – Part 3

Posted on April 3, 2013 by Team Captain

This is part 3 of the Jonathan Agin series, “Childhood Cancer – My Road Map” Money makes the world go ’round. Or so we are told. Certainly for medical research, this is true. And, for the childhood cancer community, it … Continue reading →

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged childhood cancer research, DIPG, grants, Harold Varmus, intramural Funds, Jonathan Agin, lobbying, Malcolm Smith, NCI, NIH, The Cure Starts Now. Collaborative | Leave a comment

The Funding Conundrum for Pediatric Cancer

Posted on March 6, 2013 by Team Captain

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 →