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: Pediatric 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 Active Military, Adolescent and Pediatric Cancer Research, AYA, breast cancer, CDMRP, Congressionally Directed Medical Research Program, Department of Defense, DOD, fertility preservation, lung cancer, M.D., Military, NIH, ovarian cancer, Peer-Reviewed Young Adult, prostate cancer, psychological needs, psychosocial needs, Stuart Siegel, U.S. Census Bureau
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 Ellyn Miller, Foreign Corrupt Practice Act (FCPA), Gabriella Miller, Gabriella Miller Kids First Research Act, Gabriella Miller Kids First Research Act 2.0, Gus Bilirakis., Jennifer Wexton, Mark Miller, National Cancer Institute, National Institutes of Health, NIH, pediatric cancer, Peter Welch, rare disease, Smashing Walnuts, Ten-Year Pediatric Research Initiative Fund, Tom Cole, U.S. Securities and Exchange Commission (SEC)
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
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
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Maine, Vincristine, vincristine shortages
Leave a comment
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults
Tagged Alliance for Childhood Cancer, Arms Wide Open Childhood Cancer Foundation, Capitol Mall, Congressional Childhood Cancer Caucus, CureFest, Freedom Plaza, Golden Toast, Joe Baber, Kids V Cancer, Night of Golden Lights, Rally for Medical Research, Rally Foundation for Childhood Cancer Research, The Truth 365, The White House, Washington DC
1 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
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
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Avon, childhood cancer, elavator speech, Enfamil, Flavorice, Gerber, gold, goldtember, Huggies, Instagram, Joe Baber, Pampers, pink, pinktober, Tupperware, Twitter
2 Comments
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 Access and Research (S.T.A.R.) Act, Action, Clemson, Diffuse Intrinsic Pontine Glioma, H.E.L.P Committee, health, Leukemia, Rachel Edwards, research, rhabdomyosarcoma, Senator Lindsey Graham, Senator Tim Scott, South Carolina With Purpose, The Childhood Cancer Survivorship, The National Cancer Institute, Treatment
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
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 bone marrow, bone marrow transplant, Cancer, child birth, Cord Blood, cord blood stem cells, genetic disorders, immune deficiencies, Joe Baber, medical resource, pregnant, stem cells, umbilical cord
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 #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
