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Coalition Against Childhood CancerAnnual Meeting = Ann & Robert Lurie Children's Hospital of ChicagoJune 28th, 20174 months to go.
- Cord Blood, a life line
- CAVATICA Genomics Data Sharing
- $30 million for AYA
- Rare Disease Week Update
- 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
- Baby Steps in Congress
- Bereavement Meeting
- Open Letter to Congress
- September, 2015 in Our Capitol
- As Our Children Wait – Part 4, Conclusion
- As Our Children Wait – Part 3
- As Our Children Wait – Part 2
- As Our Children Wait – Part 1
- Why Motorsports?
- Moving the Needle
- What Not to Say When There is Nothing to Say
- NIH Budget Priorities
- Texas Proud!
- #MoreThan4 NCI Email Exchange
- Father, Daughter, Date Night
- Five year cure, …really?
- My Calling
- Fixing the Faults
- A Pair of Shoes
- So, It Begins:
- September’s Child
- Update: Camp Can Do
- Giving It All
- September – #ChildhoodCancerChallenge
- Where are you now, Rock Hudson?
- Lock Up September
- Compassionate Use
- The Fault in Our Systems
- Want to Make a Difference?
Missing Kylie by Mark Myers
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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
Category Archives: Rare Disease
We are living in truly amazing times as scientists are just beginning to understand the power of stem cells. In particular, cord blood stem cells are providing new hope to cancer patients throughout the world. At Save the Cord Foundation, … Continue reading
Editor’s Note: CAVATICA completed Beta testing and went live on October 17, 2016. This is a huge step in the right direction to eliminate silos of data and enter a new world of data sharing. The complete story can bed … Continue reading
2016 Rare Disease Legislative Advocacy Update During the first week of March Every Life Foundation hosted the 2016 Rare Disease Week on Capitol Hill. The week was packed with events that began with Rare Disease Day at the NIH followed … Continue reading
I just can’t believe what I read the other day and what I am about to write about right now. This about trust—trust between patients and their healthcare providers. This is about trust that is being broken. What I read: … Continue reading
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
I spent a brrrrrr cold Thursday afternoon in Philadelphia, at a Cancer Precision Medicine Conference in Philadelphia, hosted by the American Association for Cancer Research (AACR) and the Philadelphia Media Network. It was the first time that representatives from 6 … Continue reading
Natalia Sofia is a childhood cancer survivor. Two years ago, she was only eight years old and diagnosed with Ewing’s Sarcoma of her femur. She has endured surgery, intense chemotherapies and radiation treatments. She suffers from side effects of … Continue reading
Getting things done for childhood cancer in Congress is not easy. For one, even as a community, we have very little political clout. One of the best things going for us is that we have the Childhood Cancer Caucus in … Continue reading
Last night I went to a bereavement group. It’s for parents that have had a child die. I actually like to go to these meetings. There are no pretenses. We are all walking down the same path. We understand each … Continue reading
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
September 2015 in our nation’s capitol will be full of activities that will highlight the need for more medical research and an opportunity to show our government that we need to make childhood cancer a national priority. Below is a … Continue reading
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
“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
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
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
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