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- Thankful and Fearful
- Every 2 minutes?
- Jace Ward’s Friends Can’t Wait
- Think about others
- Collaboration to Cure Medulloblastoma
- Two Little Words
- Turn Away… You may not want to hear this
- Cord Blood, a life line
- CAVATICA Genomics Data Sharing
- The Cancer Moonshot: Are Our Kids Stepping on the Moon Too?
- Broken Trust
- Fly Me to the Moon
- I Gladly Spoke Up for Kids With Cancer Today
- A 10 year old, Speaking from Experience
- Bereavement Meeting
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Missing Kylie by Mark Myers
Better Angels by Sadie Keller and Michael McCaul
The Truth 365 VideoIf you have not had a child suffer from cancer, you must watch this video to get the real picture of what it is like. It takes only 8 minutes, but it will be the best 8 minutes you will spend in order to understand what is happening to our kids and what we can do about it.
Click photo below to see The Truth365 Video
Tag Archives: Brain cancer
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 Big Data, biospecimens, Brain cancer, Cancer Moonshot, CAVATICA, CBTTC, Charlotte A. Cavatica, Children’s Brain Tumor Tissue Consortium, CHOP, cloud-based, Collaboration, computer science, genomics, immunotherapy, informatics, Laurie Orloski, Pacific Pediatric NeuroOncology Consortium, precision medicine, silos, The Children’s Hospital of Philadelphia, tumor biology, tumor tissue Leave a comment
Where are you now, Rock Hudson?
Are you wondering who is Rock Hudson? Do you think I have lost my mind? Well ….. Since my son Steven’s diagnoses with Stage Four Osteosarcoma over 7 years ago, followed by a diagnosis of Secondary Acute Myelogenous Leukemia, which required … Continue reading
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
it was one of those days
Author: Annette Leslie Related Article: Never Ever Capitalize cancer
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease Tagged #1 disease killer, Annette Leslie, Brain cancer, Brain Tumor, Carson Leslie 2 Comments
Never Ever Capitalize “cancer”
Every Year in September during the Childhood Cancer Summit and CureFest I remember five years ago, meeting Carson’s mother and Max’s grandfather. Richard Plotkin, a retired lawyer, read a book written by Annette Leslie’s, then 17 year-old son, Carson. He was … Continue reading
Tissue Donation – The last thing any parent wants to give
Progress, unfortunately is sometimes forged from the fires of pain mixed with strength, courage, passion and determination. Nancy Goodman has such a story. Nancy made a donation that no parent ever wants to give. “My son, Jacob, was a beautiful, … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease Tagged autopsy, Brain cancer, Congressional Childhood Cancer Caucas, Creating Hope Act, DIPG, donation, Dylan Jewett, FDA, four square clobbers cancer, Hope Act, Jacob Goodman, Joe Baber, medulloblastoma, Morquio A syndrome, Nancy Goodman, President Obama, Rare Pediatric Disease Priority Review Voucher, tissue, tumor, Vimizim Leave a comment