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Rare Disease Week Washington, DCFebruary 25th, 201840 days to go.
- 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
- Want to Make a Difference?
- Seeing is Believing:
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
Tag Archives: NCI
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
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
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
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
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
This summer I wrote a raw piece entitled “The Fault in Our Systems”. Our family’s efforts to get Nathalie access to immunotherapy treatment (available to adults) seemed to be going nowhere. The inequities were everywhere and the playing field was … Continue reading
This will be PAC2’s 7th September, aka National Childhood Cancer Awareness Month. Starting virtually unaware, except for the worst fact about childhood cancer, over the years we’ve learned that the research funding for all cancers is not the same, and … Continue reading
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
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
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
Recently, the National Institutes of Health (NIH) announced it’s support for palliative palliative care (pronounced pal-lee-uh-tiv) for adults and children suffering from serious illness. To be honest, for a long, long time, I always associated palliative care with death, dying and hospice. Many … Continue reading
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
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
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
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
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