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
Tag Archives: DIPG
Every 2 minutes?
In our world, when something is considered to be rare, it usually denotes that it has value. Everyone would agree that the Hope Diamond and Leonardo De Vinci’s Mona Lisa, painted in the 16th century, is rare and very valuable. … Continue reading
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
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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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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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Giving It All
Editor’s Note: One day, their 9 year old daughter is perfectly normal and healthy. The very next day they heard these words, “Your daughter has cancer and it’s terminal.” It happened just that quickly. About one year later, Mark and Ellyn … Continue reading
Survivor 2nd Edition
In our first edition of Survivor, we followed a typical group of 36 kids that were diagnosed on one day with childhood cancer. We used 36 kids because when the first article was written, in the United States, on average … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease
Tagged Acute Lymphocytic Leukemia, Acute Myeloid Leukemia, ALL, American Cancer Society, AML, Astrocytoma, Brain Tumor, cardiac disease, Central Nervous Syatem, chemotherapy, CNS, Cranial radiation therapy, cyclophosphamide, DIPG, Ependymoma, Ewing Sarcoma, Hodgkin Lymphoma, Joe Baber, Medulloblastomia, Neoplasms, neuroblastoma, Non Hodgkins Lymphoma, osteosarcoma, Ovarian Germ Cell Tumors, radiation, Retinoblastoma, rhabdomyosarcoma, Testicular Germ Cell Tumors, Wilms tumor
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Turn Foreign Aid into Cures for Cancer
In 2011, the United States spent $49.5 billion on foreign aid ( $17.8 billion in military assistance and $31.7 billion economic assistance) . Foreign aid has been a hot topic ever since our country slipped into recession in 2008. On … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged DIPG, foreign aid, HIV/AIDS, Joe Baber, medulloblastoma, National Cancer Institute, NCI, neuroblastoma
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Shocker of a Vacation
Most people spend their summers doing things like taking vacation. I, on the other hand, spent this summer getting involved in childhood cancer awareness and trying to figure out ways to spearhead a new fundraising effort. As I discussed in … Continue reading
Advocacy and Direction
Lately, I have wondered whether or not the childhood cancer community is on the right track overall. By this, I mean, is the direction of the community in terms of raising money, awareness and the manner of funding research the … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged advocate, ALL, DIPG, HR 2019, Jonathan Agin, Kids First Research Act, Lobbyist, National Cancer Institute
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Adrift in the Waters of Childhood Cancer-Arguing to Change the Standard of Care
April 11, 2008 will always remain etched in my memory for one simple reason. It is the day that we heard the words “your daughter has cancer.” They are four of the worst words that a parent could ever imagine … Continue reading
Engaging the Pharmaceutical Industry – Part 1
This is beginning of a four part series by Jonathan Agin, an attorney and well known childhood cancer advocate (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel Agin and Trevor Agin. Alexis was … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged childhood specific, compounds, Congress, Creating Hope Act, DIPG, DIPG Collaborative, FDA, Food and Drug Administration, harold V arms, Jonathan Agin, lobby, M.D., Nancy Goodman, National Cancer Institute, pediatric cancer drugs, pharmaceutical companies, profit model
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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
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