Category: Goverment


December 18, 2019
Contact: Karen Revels, Executive Director
Facebook: @cannonballingcancer


ORLANDO, Fla. – Orlando-based nonprofit, Cannonball Kids’ cancer (CKc) Foundation, announced today that Report Language accompanying the FY 2020 Appropriations Bill – originally drafted by the organization in partnership with Representative Stephanie Murphy and Senator Marco Rubio – was formalized by Congress’s official passing of the bill.

The Report Language will help close a gap the foundation identified in the Recalcitrant Cancer Research Act, which directs federal spending toward research on the nation’s deadliest cancers (those with a five-year relative survival rate below 50%). The Act currently only addresses adult cancers, but by including the deadliest pediatric cancers in the report language individually, the Committee will compel the National Cancer Institute (NCI) to focus research funding on those cancers as well. The committee also urged the NCI to utilize available resources to aid in the discovery of better treatments and cures to improve overall childhood cancer survival rates and requested an update on the progress of pediatric cancer research in 2021.

“This is a big win in the fight against pediatric cancer,” said Executive Director, Karen Revels. “It is simply not acceptable that in 2019 some forms of pediatric cancer have a zero percent survival rate. We hope this is just the first of many efforts to be made to prioritize federal funding for pediatric cancer research. We are so grateful for this step in the right direction.”

Among the cancers addressed in the report language, high-risk neuroblastoma is the cancer diagnosis received by Cannon Wiggins, CKc’s namesake, in 2014. The other cancers prioritized in the report are: anaplastic astrocytoma, diffuse intrinsic pontine glioma (DIPG), glioblastoma, Juvenile myelomonocytic leukemia, recurrent osteosarcoma, rhabdomyosarcoma, and diffuse anaplastic Wilms tumors. As an example, there are zero long-term survivors of DIPG, and, at diagnosis, families are told their child has less than one year to live.

Pediatric cancer remains the number one killer by disease of children in the United States. Forty-three children are diagnosed with cancer and every day at least seven children will die from cancer or the side-effects of the existing treatments. As many as 95% of childhood cancer “survivors” are likely to experience at least one late effect of treatment, with a third suffering life-threatening and chronic side effects and another third

suffering moderate to severe health problems. Pediatric cancer treatments have gone largely without progressive developments for over 20 years; for some forms of childhood cancers, the survival rate is still 0%. CKc is transforming this landscape by funding innovative, first-of-its-kind research and educating the public on the realities of pediatric cancer, both the rate of survivorship for various cancers and the impact of pediatric cancer treatments on survivors.

About Cannonball Kids’ cancer Foundation:

Cannonball Kids’ cancer Foundation’s mission is to fund innovative and accessible research for children fighting cancer to provide better treatments and quality of life, and to educate for change. Their rigorous, relationship-based, invite-only grants process ensures that 92% of CKc-funded trials are first-of-their-kind in the US. To date, CKc has awarded $2.4 million funding 24 research grants creating 593 options for treatment for children in 25 states, DC, Canada, Scotland, and Switzerland.

[EDITOR’S NOTE: The “c” in cancer in the name Cannonball Kids’ cancer Foundation is intentionally lowercase to give the word “cancer” an inferior status.]

A Win For The Kids: The Childhood Cancer STAR Act is Approved by Congress

History was made last week as Congress passed the Childhood Cancer Survivorship, Treatment, Access, and Research Act of 2017, or the Childhood Cancer STAR Act. The bill will now move on to be signed into law and efforts will begin to ensure it is properly funded. The STAR Act is designed to maximize discovery, and accelerate development and availability of promising childhood cancer treatments and has been a focus of CKc’s and other pediatric cancer foundations’ lobbying efforts for years. This bill amends the Public Health Service Act to authorize the National Institutes of Health (NIH) to provide support to collect the medical specimens and information of children, adolescents, and young adults with selected cancers that have the least effective treatments in order to achieve a better understanding of these cancers and the effects of treatment. The STAR Act is the most comprehensive childhood cancer bill ever voted on by Congress and had wide bi-partisan support. We’d like to thank representatives Michael McCaul, G. K. Butterfield, Jackie Speier, and Mike Kelly for leading the efforts to get it passed and to all pediatric cancer advocates who lobbied hard for this bill! A major win for the kids!

It’s hard to put into words this past week in DC, but here goes…

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!

Stay tuned!

Time for this Mumma bear to love on her babies and husband!

CKc on The Hill

Today, The Hill, a top US political website, published an op-ed article written by CKc Executive Director Melissa Wiggins to help educate and urge policymakers to increase federal funding for pediatric cancer research. Melissa, along with CKc Education Director Kelly King, is meeting with several key policymakers in Washington D.C. this week to coincide with a key House hearing on the FY2019 National Institute of Health (NIH) budget. A key pillar of our mission is to educate for change… we are honored to reach such an influential audience via The Hill.

Click Here to Read the Full Article!

We made a change!!!!

Wow!!! We made a change!!!! I am so proud to be part of team Florida. Thank you to Caleb’s Crusade for the picture and Quote! 

I would like to recognize an achievement from our Florida delegation for the Alliance for Childhood Cancer Advocacy Day (June 24). Because of our efforts we secured 3 more co-sponsors for the Conquer Childhood Cancer Act from the state of Florida!!! This is a great advancement and proof that this work does matter. Thank you to all those who support our advocacy efforts. (Mica FL-7 R, Ross FL-15 R, Jolly FL-13 R)

— Caleb’s Crusade Against Childhood Cancer

Photo: Caleb's Crusade
Photo: Caleb’s Crusade


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