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Rare Disease Week Washington, DCFebruary 25th, 2018
- 4 TIMER
- Turn Away… You may not want to hear this
- How can a baby be a hero?
- September 2017 in our Capitol
- Lock up September 2017.
- Cord Blood, a life line
- CAVATICA Genomics Data Sharing
- $30 million for AYA
- 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
- Open Letter to Congress
- 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?
- Compassionate Use
- The Fault in Our Systems
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: Pediatric Cancer
Editor’s Note: Most times, when you meet someone for the first time, either in person or digitally, you never know which road they used to come into your life. Rachel Edwards certainly used the road less traveled when she came … Continue reading
About eleven years ago, I was with my middle daughter, JoAnna Baber on our overnight shift at Rady Children’s Hospital in San Diego, CA watching over my 18 month old grandson and her nephew, Conor after he had lifesaving surgery … Continue reading
Yes! A baby can be a hero! Babies are saving lives with their life saving cord blood stem cells. These miracle cells are currently being used to treat and cure more than 80 life-threatening illnesses, including many cancers, immune deficiencies … Continue reading
Updated 9/5/2017 In our nation’s Capitol, September will be full of activities that will highlight the need for more medical research and opportunities for us to show that we are One Voice Against Childhood Cancer. Together, we are asking our … Continue reading
We all know that September is Childhood Cancer Awareness Month. It’s a 30 day period each year that is set aside for the children, or is it?. It’s a chance for us to make the world pay a little more … Continue reading
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
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
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
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