Tag Archives: NIH

$30 million for AYA

Editor’s Note:   Update May,20,2016:Congress Heard You! A huge THANK YOU to everyone who called their Representative and signed on to the support letter asking for $30 million for a Peer-Reviewed Young Adult, Adolescent and Pediatric Cancer Research Program within the … Continue reading

Posted in Cancer, Childhood Cancer, NASCAR, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , , , , , , , , , , , , | 1 Comment

Open Letter to Congress

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , | 4 Comments

As Our Children Wait – Part 4, Conclusion

The rate of childhood cancer has been escalating since the 1970’s, today 1 in 285 children will be diagnosed with cancer before the age of 20. Our children continue to die, suffer and be irreparably harmed and all the while, … Continue reading

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As Our Children Wait – Part 3

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

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As Our Children Wait – Part 2

“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

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As Our Children Wait – Part 1

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

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Moving the Needle

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

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NIH Budget Priorities

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

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Fixing the Faults

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

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September – #ChildhoodCancerChallenge

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

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Compassionate Use

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 , , , , , , , , , , , | 4 Comments

The Fault in Our Systems

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 , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

30% Funding Cuts

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , | 3 Comments

Thank You, American Cancer Society

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 , , , , , | 8 Comments

Palliative Care

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

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The Exploitation of Childhood Cancer

You all remember that little government shutdown a handful of weeks back don’t you? The emotional press conferences held by members of Congress on both sides of the aisle talking about how children with cancer would not receive treatments at … Continue reading

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Adrift in the Waters of Childhood Cancer-Arguing to Change the Standard of Care

April 11, 2008 will always remain etched in my memory for one simple reason. It is the day that we heard the words “your daughter has cancer.” They are four of the worst words that a parent could ever imagine … Continue reading

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We need more than just research

A mother noticed that her six year-old son’s eyelids were not closing normally and when he walked, he was slightly off balance.  A few days later, his parents’ worst nightmare became a reality; they were told that their son has … Continue reading

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Federal Funding for Childhood Cancer Research – Part 3

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

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