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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: National Cancer Institute
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
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
#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
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
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 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
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 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
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 Leave a comment