Missing Kylie by Mark Myers
51 Childhood Cancer organizations strong and growing!
" 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
September 2017 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
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Lock up September 2017.
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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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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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
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 AT/RT, Children’s Health Act of 2000, Donna Carroll Carmical, HHS, National Children’s Study, NCI, NCS, NIH
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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
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Moving the Needle
Recently in Washington, D.C. there was a hearing to discuss the $30 billion 2016 budget requested by the National Institute of Health (NIH), these are our tax dollars at work. The largest of our childhood cancer organizations admirably raises tens … Continue reading
What Not to Say When There is Nothing to Say
Originally posted on A Generous Helping:
Recently, I was asked for advice about how to respond to the parents of a child diagnosed with cancer. Let me say from the outset that I am a dubious source whose council typically…
NIH Budget Priorities
Each decade we lose more than 27,000 children to childhood cancer, another 120,000 suffer impacts of treatments including secondary cancers. This picture has not improved much over the past 30 years and it will continue to change only incrementally, if … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged acute lymphoblastic leukemia, AIDS, ALL, Alzheimer’s research, Antimicrobial Resistance, Appropriations Committee, AT/RT, Brain initiative, chemotherapy, Congress, Declan Carmical, DIPG, Dr. Francis Collins, Dr. William Carroll, federal research dollars, Health & Human Services and Education, hearing problems, heart problems, infertility, Labor, learning disabilities, National Cancer Institute, National Institues of Healt, NCI, NIH, Precision Medicine Initiative, secondary cancers, Senate, StandUp2Cancer, stunted growth
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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
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