Category: News

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!

Last week, Michael Wiggins, co-founder of CKc and Chairman of the Board, met with one of our funded researchers, Dr. Mario Otto, at the University of Wisconsin. Michael toured their Children’s Hospital and Medical Sciences facility and met with Dr. Otto to discuss the progress of CKc’s clinical trial grant, awarded in honor of Trevor Scheerer in 2016, involving novel immunotherapy stem cell transplant therapy for rhabdomyosarcoma. They also discussed future research opportunities, funding Young Investigators, and the collaboration and sharing of data among pediatric cancer researchers. CKc is pursuing novel, alternative approaches to treat childhood cancer. Funding innovative research is our mission!

On May 9 and 10, CKc’s Education Director Kelly King traveled to San Francisco to attend ANR2018 – a biennial conference hosted by the Advances in Neuroblastoma Research Association. CKc was an exhibitor at the event, allowing us to connect with decision makers who are shaping the future of neuroblastoma research and treatment. It was an honor and a “coming of age” moment for CKc, as our logo was displayed amongst the ranks of foundations we have long-respected and admired, like Alex’s Lemonade Stand and St. Baldrick’s. During the ANR Conference, Kelly also was introduced to the freshest researchers and projects in the field by attending scientific presentations and a Young Investigator reception. She noted that survivorship was a common topic of the conference as the field is facing this issue in a prominent way and investigating methods to decrease toxicity levels of treatments to improve quality of life for survivors.

While in town, Kelly made a visit to Benioff Children’s Hospital at UCSF to tour the facilities and catch up with two of our funded researchers: Pediatric Neuro-oncologists Dr. Cassie Kline-Nunnally and Dr. Sabine Mueller. Dr. Kline-Nunnally is the first recipient of a CKc Young Investigator grant and serves on our Scientific Advisory Board. Dr. Mueller is the lead investigator on a first-of-its-kind immunotherapy clinical trial for brain tumors which receives funding from CKc. Kelly also met with two sarcoma investigators to discuss their latest projects and the potential for CKc funding.

The theme of this year’s ANR conference was “building bridges” and we certainly feel like new bridges were built for CKc during this trip to the Golden Gate city!

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!

CKc Gold Gala Numbers are in!

DRUM ROLL PLEASE

I want to thank everyone who made the CKc Gold Gala the best we have ever had! We raised MORE money and educated MORE people than EVER.

I’ve been saying “Go Big or Go Home” since our inception! It’s a motto that runs deep in our team and in our mission. In fact, we have a sign as you walk into CKc headquarters that says just that! So, when we set our goal for the gala, it may have seemed most unrealistic for a three-year-old foundation to set its sights on raising a half million dollars IN ONE NIGHT but to us, to my team, well it’s motivation, it drives us, it pushes us to our limits and, frankly, that’s what the pediatric cancer world needs. Half measures avail us nothing, and half measures we don’t do!

We didn’t make our goal, but I am here to say that’s okay!!! CKc doesn’t give up! We don’t lay down! We pull our bootstraps up and get right back to work! In the words of Rory Vaden, “Success is never owned, it’s only rented; and the rent is due every day.” Yes!!!

I realize that being $75,000 short of our goal means four researchers will be funded, and not five. Fifteen fewer kids will get on trials. That, my friends, is the gut-wrenching part for this Scottish lassy! I’m the proudest Mumma Bear ever of my team, but to say my heart doesn’t ache a little for these kids battling to live would be a lie. And, frankly, honesty is how we roll here!

For those of you at the event, I am aware there was a little confusion with the “open ask” at the end of the night. So, please know this is not an ungrateful plea, but a heartfelt one. If you wished to donate on Saturday and weren’t able to do so, please donate by following this link. As difficult and uncomfortable as it is to ask for money, I know it’s more difficult to attend a child’s funeral and watch friends bury their babies – both of which I’ve personally done. So, I am pleading with you – if you’re able to donate $10 or $10,000 to help us fund the fifth and final researcher and give those 15 more kids a chance, then please help us reach our goal!

I want to thank everyone for attending, for being open to being educated about the reality of pediatric cancer, and for donating with such open and generous hearts. I was blown away on Saturday by the love you showed CKc and by your desire to learn more about the reality of pediatric cancer.

Please watch this video of Tony King speaking at the gala. Brutal! Devastating! Unimaginable! But, sadly, a reality.

Feel free to email me at Melissa.Wiggins@cannonballkidscancer.org with any feedback about our gala! We want to improve each year and grow so we can get more kids on trials and create more options for those who have none! Thank you for being a part of changing the status quo of pediatric cancer.

 

Click here to view and download photos from the Gold Gala

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Hi CKc Community,

We have exciting news to share! This morning, Cannonball Kids’ cancer had an amazing opportunity to compete in the Victory Cup Initiative in Orlando. Think of it like the “Shark Tank” for non-profits! We were blessed to named as the winner and the recipient of a $20,000 reward! Twenty thousand dollars which will go directly into funding innovative, accessible research for children fighting cancer!

CKc was selected as a Top 10 Finalist out of more than 100 applicants for this prestigious competition. I had the honor of representing CKc and delivering the required 2 minute, 30 second mission-based pitch in front of a sold out audience of more than 500 philanthropists.

I am beyond thrilled! Last year, we weren’t even able to apply, so to be selected as a finalist in our first year and then chosen as the winner, it is a really big deal for us. But, what I am even more proud of is what we have accomplished TOGETHER! Even if you weren’t in the audience, a piece of you was there in spirit today because we wouldn’t even be at this level without your support, your donations, your volunteer hours and your encouragement! I was able to share an incredible message that we are now impacting the lives of 60 children and creating options where there were none! Today’s competition was another big step forward in educating for change and gaining support that will enable us to truly change the status quo of pediatric cancer treatments FOREVER!!

We wanted you, our donors, supporters and biggest fans to hear this fantastic news right away! Without you, none of this would be possible.

Thank you for your belief in us and for allowing us to do what we do best – fund innovative, accessible research and provide options for children fighting cancer.

With much gratitude,

Melissa Wiggins
Founder | Executive Director
Cannonball Kids’ cancer

About The Victory Cup Initiative:

The event is a platform where companies come together for philanthropic investing with a twist. This unique event is designed to provide a high-profile opportunity for charitable organizations to tell their stories, build their strategies and partner with business and community leaders to make a difference in Central Florida.

During this breakfast event, 10 of Central Florida’s top nonprofits present a 2 minute, 30-second pitch on who they are, how they are changing lives and how they are serving the community to a room of philanthropists who will vote to determine the winner of the $20,000 grand prize. Organizations will also compete for second ($15,000) and third place ($10,000) financial awards. All remaining organizations will be awarded a $1,000 participation grant.

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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CANNONBALL KIDS' CANCER FOUNDATION IS A 501(c)(3) NON-PROFIT COMMUNITY SERVICE ORGANIZATION. CANNONBALL KIDS' CANCER FOUNDATION'S REGISTRATION NUMBER IS CH41586. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE, 1-800-435-7352 WITHIN THE STATE OF FLORIDA OR BY VISITING www.800helpfla.com. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.