Category Archives: Childhood Cancer

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

Posted in Cancer, Childhood Cancer, NASCAR, Pediatric Cancer, Rare Disease, Uncategorized | Leave a comment

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , | 2 Comments

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

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , | Leave a comment

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

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

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , , , , , | Leave a comment

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

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

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , | Leave a comment

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

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

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

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , | 2 Comments

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , | Leave a comment

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged , , , , , , | Leave a 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

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

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

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

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

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

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

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease | Tagged , , , , , , , | 6 Comments