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- Collaboration to Cure Medulloblastoma
- Two Little Words
- September 2018 in our Capitol
- Lock up September 2018.
- 4 TIMER
- Turn Away… You may not want to hear this
- How can a baby be a hero?
- Cord Blood, a life line
- CAVATICA Genomics Data Sharing
- $30 million for AYA
- The Cancer Moonshot: Are Our Kids Stepping on the Moon Too?
- Broken Trust
- Fly Me to the Moon
- I Gladly Spoke Up for Kids With Cancer Today
- A 10 year old, Speaking from Experience
- Bereavement Meeting
- Open Letter to Congress
- As Our Children Wait – Part 4, Conclusion
- As Our Children Wait – Part 3
- As Our Children Wait – Part 2
- As Our Children Wait – Part 1
- Why Motorsports?
- Moving the Needle
- What Not to Say When There is Nothing to Say
- NIH Budget Priorities
- Texas Proud!
- #MoreThan4 NCI Email Exchange
- Father, Daughter, Date Night
- Five year cure, …really?
- My Calling
- Fixing the Faults
- A Pair of Shoes
- So, It Begins:
- September’s Child
- Update: Camp Can Do
- Giving It All
- September – #ChildhoodCancerChallenge
- Where are you now, Rock Hudson?
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Missing Kylie by Mark Myers
The Truth 365 VideoIf you have not had a child suffer from cancer, you must watch this video to get the real picture of what it is like. It takes only 8 minutes, but it will be the best 8 minutes you will spend in order to understand what is happening to our kids and what we can do about it.
Click photo below to see The Truth365 Video
Category Archives: Uncategorized
I came into the childhood cancer community in 2013 as a member of the “general public”, having no personal connection to a child with cancer. My journey is different but not without appreciation for what cancer is and how devastating … Continue reading
This summer I wrote a raw piece entitled “The Fault in Our Systems”. Our family’s efforts to get Nathalie access to immunotherapy treatment (available to adults) seemed to be going nowhere. The inequities were everywhere and the playing field was … Continue reading
I have been actively engaged in the advocacy fight for more federal funding for childhood cancer since my first trip to Washington DC in June of 2008. This began less than 3 months after I lost my only son, Caleb, … Continue reading
For decades, the American Cancer Society (ACS) had been funding a nationwide childhood cancer camp program. In 2013, a business decision was made to cut funding for this program in its entirety. This was at no fault of the camps, … Continue reading
This will be PAC2’s 7th September, aka National Childhood Cancer Awareness Month. Starting virtually unaware, except for the worst fact about childhood cancer, over the years we’ve learned that the research funding for all cancers is not the same, and … Continue reading
You may remember the #SaveJosh news articles in the spring of 2014 where little Josh Hardy’s family mounted, as a last ditch effort, a social media campaign to get him into a clinical trial that St. Jude’s doctors said was … Continue reading
Maybe, I am a little old-fashioned with my “mug shot” and in a few other ways, like this one: It is so amazing to me that in today’s “connected” world, there are so many people who you will work closely … Continue reading
I am planning to write a series of posts that pertain to clinical issues, like palliative care services for improving outcomes in childhood cancer, but I wanted to take a step back and give some background first, especially about my … Continue reading
Originally posted on This Grey Matters Blog:
When we first announced the name of our foundation, people thought we were a little crazy. I understand that the name is unconventional, but so is our goal. It is different. Some might…
Just weeks before she died of a brain tumor, ten-year-old Gabriella Miller put it best. When asked what message she would give to the nation’s political leaders about the need for children’s cancer research, she responded in a YouTube video … Continue reading
Last year, school had started once again as usual, but for the first time in the PE class that I was teaching, I had a cute little girl who was bald headed. Ellie started kindergarten as a brave, beautiful girl without … Continue reading
Meet Suzanne Corey Gwynn. She’s going to build a house in Seattle, Washington. It’s not going to be a small little house, but a big house. Suzanne is not an architect with a blueprint or even a carpenter with a hammer. … Continue reading
Editor’s Note: It is with deep respect and profound appreciation for mothers everywhere that Four Square Clobbers Cancer has chosen Mother’s Day to present Blyth Lord’s touching and tender article from her Courageous Parents Network. Today is Hump Day in … Continue reading
Editor’s Note: No one in my childhood cancer community, including me, likes the word “rare” when it used to describe the disease. I met Rob and three others from the childhood cancer community at a three day RDLA event in … Continue reading
I certainly don’t want to scare you, the blog reader, away– but when provoked by someone or something like the American Cancer Society (ACS), I become one of these ladies. Why would I paint myself in this light, on “the … Continue reading
For my friends who may find themselves on a similar journey: Reflecting on Caleb’s short life: This is the most difficult thing that I do. It has been so long now. Memories are not as fresh and the emotion … Continue reading
“I’m not sure if it is possible, but if I can send you a “signal” after I go, then I promise that I will.” by Laurie’s mom, August 6 2009, 2 days before her untimely passing from a rare and aggressive uterine … Continue reading