Category Archives: Uncategorized

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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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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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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#MoreThan4 NCI Email Exchange

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

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Father, Daughter, Date Night

The other day I decided to take my 7 year old daughter, Bella, out on a date. I found a traveling circus that was in town and recalled how much I enjoyed the circus as a kid and thought it … Continue reading

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Immunotherapy

I am not sure how many people outside of the cancer research community know this, but it is well recognized that the human body is equipped to fight off cancer on its own. The same immune system that we have … Continue reading

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My Calling

I came into the childhood cancer community in 2013 as a member of the “general public”, having no personal connection to a child with cancer. My journey is different but not without appreciation for what cancer is and how devastating … 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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Update: Camp Can Do

For decades, the American Cancer Society (ACS) had been funding a nationwide childhood cancer camp program. In 2013, a business decision was made to cut funding for this program in its entirety. This was at no fault of the camps, … 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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