It’s hard to put into words this past week in DC, but here goes…
Strategy is a key word that keeps popping into my brain. I wish it was as simple as telling our nation’s leaders that there was a huge gap in pediatric cancer research funding and that was the end of it… but, it’s not. Strategy is required.
A phrase that comes to mind as I type this message on our flight home is this, “The breeze is always strongest at the top of the mountain.” It’s hard guys – I can’t lie. But, what is harder are calls from your friend (Kelly King) saying, “He can’t die, Melissa, he can’t die.” Or, watching one of your friends (Monica Angel) walk behind a tiny coffin that holds her five-month-old baby girl! We work HARD so this madness stops! I (we) will never stop!!!
Sometimes quickly, sometimes slowly. DC efforts are the latter! They take years of effort from hundreds of people. Not one group, but many! Many people are hitting the Hill doing exactly what we are doing! We are just thankful CKc is and can be, part of the solution.
I am truly so proud of Monica and Kelly – in more than 15 meetings with our government leaders they shared of their horrific loss. However, each time they did, they related it back to why change matters – why they believe in CKc and why they do this! Why others shouldn’t suffer! How we can do better! How we need to do better! This is only their second visit to DC with Team CKc and they acted like professionals – CKc is lucky to have them but more importantly, pediatric cancer is lucky to have them as advocates!
My promise as this foundation’s executive director is that we are stronger than ever! Our team is growing in strength, knowledge, power, and numbers! Change can happen at the DC level and I believe we can be a part of that solution along with others.
Sometimes quickly, sometimes slowly.
The former is important to us – we need kids in clinical trials today! Not tomorrow! Today! We talked in DC about the issue of accessibility to trials and how difficult it can be in terms of eligibility.
Many people have asked us about the reaction we get to the information we share. Perhaps surprisingly (or not), is that we found the more seasoned people we met with to be more in-tune to our message and a few of the younger aides couldn’t get us out their office quick enough – perhaps it’s too painful? I couldn’t quite understand. But, the fact remains, more want change than don’t- so we take that and we run with it!
Our foundation won’t wait around for MORE change in DC – we continue to fight for research. Kelly and I will hit ‘Research Road’ again in a week. We are traveling every other week through October to ensure not only research is funded, but the right research. Thankfully, once we seek out the right research, our incredible Scientific Advisory Board evaluates whether or not it’s worthy of the very hard earned and generous dollars people donate to CKc. We strive to be excellent stewards of all donations and funds we receive!
To quote the National Institute of Health (NIH) Director, Francis Collins, during the hearing we attended this week:
“We run out of money before we run out of ideas.”
FY18 gave a $3 billion increase in NIH funding and it looks like FY19 should be the same. This means that pediatric cancer is in a fighting position to claim some of that for pediatric cancer research.
Consistently, we reminded members that pediatric cancer is not ONE type of cancer, it’s MANY…
Some types, like ATRT (known as the baby killer cancer), kills more children 0-6 months than any other form of cancer. DIPG has zero survivors and each child is given 6 months to 2 years to live. UNACCEPTABLE!!!! UNNECESSARY!!!!!
I can prove it!!!!
Let’s take leukemia and neuroblastoma both of which are currently line items on the NIH budget – both of which have received directed funding.
When my son, Cannon, was diagnosed 5 years ago this Thursday (a day I will never forget and one I NEVER want to forget because it drives my passion and determination for change), I was told that neuroblastoma kills more children than any other form of pediatric cancer. Since that date, a ton of research dollars have been put into neuroblastoma, both private and public funding. The additional funding from the government and nonprofits, like BeatNB, have changed that statistic! Neuroblastoma is no longer the number one cancer killer – now brain cancer is.
The point is this – Research Is The KEY !!!
But it requires private and public funding! Government can do better!
Pediatric cancer REMAINS the number one killer of children by disease in the U.S. – Unacceptable! Unnecessary!
It will remain that way UNLESS more research is funded!
CKc is attempting to close the gap by funding research, young investigators and addressing accessibility issues.
My hope is that you read this blog and you feel good about your support of CKc and the work we do! We can’t do any of this without YOU! Period!
Please stay tuned… we are drafting a letter that YOU can send to your elected official – we need people in their districts reaching out to their members to push this message!
If progress in the past is an indicator of progress to be made in the future, we can look to those causes that yelled the loudest and the progress they have made!
CKc’s voice is loud! But, with YOU, it can be louder!
Time for this Mumma bear to love on her babies and husband!