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
Monkey in My Chair
Category Archives: Uncategorized
iSad, iMad, iPad
Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 4, 2014. The next … Continue reading
Let’s Push Buttons
Would you believe?: 96% of all clothing sold is for adults. 96% of all breakfast cereals are consumed by adults. 96% of all bicycle helmets are worn by adults. 96% of all cancer research conducted by the National Cancer Institute … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged American Cancer Society, FDA, gold ribbon, Joe Baber, National Cancer Institute, NCI
4 Comments
The Small Hero Amongst Us All
Editor’s Note: Jonathan Agin penned this piece two years ago for the Huffington Post. The only things that have changed since then are the additional faces of the small heroes each year. Each year, toward the middle of December, there … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Amy Winehouse, hero, Huffington Post, Jonathan Agin
1 Comment
The Exploitation of Childhood Cancer
You all remember that little government shutdown a handful of weeks back don’t you? The emotional press conferences held by members of Congress on both sides of the aisle talking about how children with cancer would not receive treatments at … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Congress, Jonathan Agin, NIH
3 Comments
Mesotheli-WHAT?
Mesothelioma is normally not a cancer one hears about in the childhood cancer community. That may be because, in most cases, because of the long latency period, it is not normally detected until the child becomes an adult. Today, children in older schools may … Continue reading
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
Friends Don’t Let Friends Relay
Editor’s note: Little has changed since Jonathan Agin penned this article for the Huffington Post in February, 2013. There are many amazing charitable organizations focused upon cancer research and support. Most of us can rattle off the big ones … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged ACS, American Cancer Society, John R. Seffrin, Jonathan Agin
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Never Ever Capitalize “cancer”
Every Year in September during the Childhood Cancer Summit and CureFest I remember five years ago, meeting Carson’s mother and Max’s grandfather. Richard Plotkin, a retired lawyer, read a book written by Annette Leslie’s, then 17 year-old son, Carson. He was … Continue reading
Dear American Cancer Society
Dear American Cancer Society, Good evening. I have always been appreciative of the work and research that the American Cancer Society funds. While I have always researched the organizations I support, it was not until recently that I decided to … Continue reading
The Climb
I have never had to personally deal with childhood cancer but have dealt with losing my parents at pivotal points in my life. My father passed away in 1996, when I was 21, having just completed my 4th year of … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Laurie Orloski
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Finding Your Footprints
Have you ever tried to walk behind someone in the deep snow and step right in their footprints? As you take each step, you may or may not hit each plant right in the already trodden snow. And then, coming … 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
2 Comments
The Rest of the Story…
From Mikelle to Four Square Team Captain: “I wrote again. I realized that I needed to tell “The Rest of the Story.” It’s about the truth of my grief, what I’ve been through. If you choose to publish it, my … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged bone marrow aspirations, Broviac, chemo, cranial fluid, cranial shunt, dialysis, IV pump, meningitis, Mikelle G. Raffel, NG tube, oscillator, pic lines, pneumothorax, port, radiation, spinal drain, Wal-Mart
10 Comments
Together
Our community is built of many similar, yet different and diverse organizations. Collectively, we are looking for a cure for childhood cancer. No one has actually been able to say with absolute certainty exactly how many organizations actually exist in … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged CAC2, Coalition for Childhood Cancer, Joe Baber
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Lessons of losing a child to cancer
As the weeks dwindle down to mark one year of losing my son, Ryan, to cancer, I have been looking back and thinking hard about what I’ve been taught, or should I say, what was thrown in my lap to … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged antibiotics, bald heads, chemo, community, doctors, fever, hospital, Mikelle G. Raffel, nurses, patch changes, protocol
4 Comments
Mr. President, Did We Miss Your Call?
President Obama, perhaps you recall that back in January 2013 I reached out to you to talk about three specific small asks for the childhood cancer community. I know that you have had a lot on your plate recently. For obvious … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Africa, gold, Jonathan Agin, NCI, President Obama, Whitehouse
1 Comment
Lobbyist
Lobbyist… There, I said it! For me, it’s very difficult saying the “L” word. It never has felt good rolling around in my mouth, banging up against my molars and sliding out between my tight lips. I have always hated that … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Alex's Lemonade Stand, Carolyn Price Walker Conquer Childhood Cancer Act of 2008, CHOP, Congress, Defense Department, DOD, Dr. Phil, Gabriella Miller Kids First Research Act, Joe Baber, Jonathan Agin, Lobbyist, Lone Ranger, National Association of Children's Hospitals, National Breast Cancer Coaliton, Nationwide Children's Hospital, Ronan Thompson, St. Baldricks, Susan G Komen for the Cure
6 Comments
We Must Stop Turning Our Backs on Children’s Cancer
When doctors told my wife and I that our soccer-playing, Harry Potter-reading 7-year-old daughter Olivia had cancer, we were struck with panic, dread and challenges we never could have imagined. And once we overcame the shock, we were stunned to … Continue reading
Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized
Tagged Capitol Hill, Childhood Action Day, chronic side effects, Conquer Childhood Cancer Act, d d, federal budget, Food and Drug Administration, heart failure, life-theatening illnesses, National Cancer Institute, pharmaceutical industry, prostate cancer, secondary cancers, Stephen Crowley, therapies
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End of Life Equality
Until we needed to enroll my daughter Alexis in a hospice program, I really had no idea how poorly we as a country manage the needs of children who face terminal diseases. Admittedly, having a conversation about children who face … Continue reading
Four-Square Clobbers Cancer 