Category Archives: Childhood Cancer

$30 Million for AYA Cancer Research

  URGENT! Rally Foundation is leading the effort to get approval again for $30 million in AYA Cancer Research.  THIS IS URGENT!    Your help is needed! What is a CDMRP and why do adolescents  and young adults need it … Continue reading

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

Kids First 2.0

Congresswoman Jennifer Wexton (D-VA-10) introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 (HR 6556) which would redirect penalties collected from pharmaceutical companies that break the law to critical rare pediatric disease research. Representatives Tom Cole (R-OK-04), Peter Welch … Continue reading

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

Color A Car

Most kids are out of school. Joe Gibbs Racing Facebook page recently asked kids to color a car and post it on Facebook. We thought it was a great idea and wanted to extend it to kids fighting childhood cancer. … Continue reading

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Researchers Round Up

RESEARCHERS ROUNDUP Ten years after a young, bright, athletic Texas teen died from brain cancer, his last wishes to help others fight cancer were celebrated by some of Texas’ best childhood brain cancer investigators. Texas has a very unique model … Continue reading

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Maine Vincristine Shortages

We are in the process of speaking to Maine’s Senator’s and selected Representatives in Washington, DC.  We are looking for examples of children who live in Maine and are, or were, affected by the recent vincristine shortages.   Please complete … Continue reading

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September 2019 in our Capitol

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 government to … Continue reading

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Collaboration to Cure Medulloblastoma

  Editor’s Note: In recognition of Brain Cancer Awareness Month, we are publishing an article that was reported in the April 24, 2019 ASCO Daily News. It highlights the massive collaborative efforts by private foundations such as the Carson Leslie … Continue reading

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Two Little Words

Two words that are used most when people contact Members of the House or Senate are: “I want,” and “I need.” Representatives and Senators hear them everyday. The two words they seldom hear are “Thank You.” This year alone, Congress … Continue reading

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

Lock up September 2019

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

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4 TIMER

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

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Turn Away… You may not want to hear this

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

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How can a baby be a hero?

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

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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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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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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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