51 Childhood Cancer organizations strong and growing!
Missing Kylie by Mark Myers
" Never capitalize the word, "cancer." It does not deserve it. " Carson Leslie, 17
Better Angels by Sadie Keller and Michael McCaul
Better Angels by Sadie Keller and Rep. Michael McCaul
How my daughter embraced life with cancer as an unexpected adventure. Catie was just one of those unique people who had the ability to touch people and make them live a little more splendidly. This is Catie's story - and how she changed the world one brilliant moment at a time.
Click photo below to see The Truth365 Video
The book, "Grace" by Melinda Marchiano
Provide Chemo Ducks for Kids
Great for young school age kids
Category Archives: Rare Disease
Jace Ward’s Friends Can’t Wait
We will remember our friend Jace as a wonderful, positive, fun loving, selfless guy who enjoyed life, loved his friends, his family and his God. To some, he may be remembered as an outstanding national advocate for DIPG research, or … Continue reading
Posted in Cancer, Childhood Cancer, DIPG, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Arms Wide Open Childhood Cancer Foundation, CAR T Cell, Chimeric Antigen Receptor T Cells, Clinical Trials, Diffuse Intrinsic Pontine Glioma, DIPG, Jace Ward, Lisa Ward, Neal Armstrong, Nurse Practitioner, Ommaya Catheter, Stanford, Storm the Heavens
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 #cureMEdullo, Annette Leslie, ASCO, Baylor College of Medicine, Cancer Prevention and Research Institute of Texas, Carry Me, Carson Leslie, Carson Leslie Foundation, Carson’s Corner, Conquer Cancer, Gerald J. McDougall, Joe Baber, Jordan Spieth Family Foundation, medulloblastoma, Nancy R. Daly, Texas Tech University Health Sciences Center, Under Armour, University of Texas Southwestern Medical Center, Walter M. Capone, Young Investigator Award
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
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
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 #SAVEtheCORD, Acute Lymphocytic Leukemia, ALL, autism, BeTheMatch, bone marrow, cerebral palsy, Cord blood registries, cord blood stem cells, donor, Dylan Praskins, FDA, Graft Versus Host Disease, GVHD, HIV, Leukemia, lymphoma, match, MDSacquired hearing loss, Myelodysplastic Syndrome, Neutropenia, Noah Swanson, perinatal stroke, public donation program, Save the Cord Foundation, sickle cell anemia, stem cells, transplant
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 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
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 aminocaproic acid, Anesthesia and Analgesia, BCG, Beverly Smith, bladder cancer, Cleveland Clinic, Dr. Andrew Stephenson, Dr. Brian Fitzsimons, Dr. Eric Kodish, Dr. Ivan Hsia, Dr. Nicole Lurie, Drug Shortages, Fabry disease, Hodgkin’s lymphoma, intravenous nitroglycerin, kidney function, Laurie Orloski, Mayo Clinics, Merck, New York Times, registered pharmacist
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 #CancerMoonshot, breast cancer, Cancer Moon Shot, Cancer Moonshot, colon cancer, DIPG, drug development, information silos, Joe Baber, lung cancer, National Cancer Institute, NCI, President Nixon, President Obama, prostate cancer, State of the Union, Vice President Joe Biden, War on Cancer, White House
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 ACCR, American Association for Cancer Research, bone marrow transplant, Cancer Precision Medicine, CAR T-cell, chemotherapy, CHOP, Devon Still, immunotherapy, Laurie Orloski, Leah Still, Leukemia, novel therapies, Philadelphia Media Network, Stephen Grupp, survivorship
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
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 #TalkIsBullshit, bereavement, death, Ellyn Miller, Gabriella Miller, pain, Smashing Walnuts
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
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 ACS, acute lymphoblastic leukemia, Aflac, American Cancer Society, Atlanta 500, Bojangles Southern 500, breast cancer, Camping World, Carl Edwards, Chevrolet, Chevy, Chicago, Chicagoland, childhood cancer, Darlington, Darlington 500, Ford, Greg Puryear, IndyCar, Motorsports Go Gold, NASCAR, New Hampshire, NHRA, Race, Race Track, Richmond, Richmond International Speedway, Sprint Cup, Team Chevy, Toyota, WoO, Xfinity
8 Comments
Texas Proud!
Annette Leslie, Executive Director of the Carson Leslie Foundation and a Four Square Clobbers Cancer blogger, has served on The Cancer Prevention and Research Institute of Texas (CPRIT) Childhood Cancer Advisory Council since 2010 and couldn’t be more Texas Proud! … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Annette Leslie, Baylor College of Medicine, Cancer Prevention and Research Institute of Texas, Carson Leslie Foundation, CPRIT, Joe Baber, M.D. Anderson Cancer Center, Texas Tech University Health Science Center, University of Houston, University of Texas, University of Texas at San Antonio, university of Texas Southwestern Medical Center at Dallas
Leave a comment
#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
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Bella, Caleb, Leukemia, Rob Whan
Leave a comment
Five year cure, …really?
Five-year relative survival rates describe the percentage of patients with cancer that are alive five years after their disease is diagnosed. Use of 5-year survival statistics is more useful in aggressive cancers that have a shorter life expectancy following diagnosis (such … Continue reading
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
Four-Square Clobbers Cancer 