Category Archives: Rare Disease

Cord Blood, a life line

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

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CAVATICA Genomics Data Sharing

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

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$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

Rare Disease Week Update

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

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The Cancer Moonshot: Are Our Kids Stepping on the Moon Too?

On September 12, 1962 President Kennedy delivered his famous “moonshot” speech. Declaring that as a nation, we would focus vast resources to landing a man on the moon and safely bringing that man back to earth. It was ambitious and … Continue reading

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Broken Trust

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

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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

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I Gladly Spoke Up for Kids With Cancer Today

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

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A 10 year old, Speaking from Experience

  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

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Baby Steps in Congress

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

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Bereavement Meeting

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

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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

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September, 2015 in Our Capitol

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

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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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Why Motorsports?

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

Posted in Cancer, Childhood Cancer, NASCAR, NHRA, Pediatric Cancer, Rare Disease, Sprint Cup, World of Outlaws | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 8 Comments

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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What Not to Say When There is Nothing to Say

Originally posted on A Generous Helping:
Recently, I was asked for advice about how to respond to the parents of a child diagnosed with cancer. Let me say from the outset that I am a dubious source whose council typically…

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