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
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
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
September 2018 in our Capitol
Updated 9/12/18 CureFest will operate as planned. Special Notice: Hurricane Florence WILL NOT have an impact on CureFest. Please read the following statement from CureFestUSA CureFest will post regular updates on our facebook page. The surest way to receive updates is 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
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Lock up September 2018.
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
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SU2C Funding Opportunities
Funding Opportunities Available From Stand Up to Cancer Dear SU2C Friends: We have three SU2C funding opportunities to bring to your attention. We would also appreciate you forwarding this announcement to your colleagues who might be interested in these topics. … Continue reading
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
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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
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
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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
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
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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
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
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$30 million for AYA
Editor’s Note: Update September 28, 2018: Congress Heard You Again! New research funding opportunities for childhood and AYA cancer are now available AND the FY19 Defense Appropriations Act provides $90 million (M) to the Department of Defense Peer Reviewed Cancer … 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
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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
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
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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
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
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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
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
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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
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
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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
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 Children’s Health Act, Donna Carroll Carmical, Dr. Collins, GAO, Government Accountability Office, Government Performance and Results Act, GRPA, HHS, Modernization Act of 2010, National Cancer Institute, National Children’s Study, NCI, NIH, Perfomance.gov
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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
