Category: News

Gratitude – Full Circle

In June of 2015, exactly three years ago, CKc Executive Director Melissa Wiggins and CKc Board Vice Chair Ashley VanDerMark traveled to Augusta, Ga., to present a check for $100,000 – every penny CKc had made in our first year as a non-profit. Our first grant was awarded to Dr. Theodore Johnson for a ground-breaking immunotherapy trial, and so much has happened since then! There are now 60+ children enrolled in the trial, including our buddy, Coulter. He was treated at several hospitals until there were no more options to save Coulter’s life. Then his parents found out about about this trial, which CKc helped fund! Now, three years later, Melissa got to visit with Coulter and his parents and see how the trial has so greatly impacted their family. Really amazing!

This video, provided by ecancer.org, shows Dr. Johnson discussing the progress of his immunotherapy trial. We are so proud of the work Dr. Johnson and his team are doing every day to make a difference for children fighting cancer.

We are also so proud of everyone who has helped CKc impact pediatric cancer in the way it has in just a few short years! We can’t make stories like this possible without your help! Thank YOU for supporting us with your donations, your confidence, your eagerness and your dedication to helping us change the future of pediatric cancer!

Last year, we launched our #NoMoreOptions campaign. CKc’s Education Director Kelly King was featured in the project, where she shared personal insight about the loss of her three-year-old son Nolan to hepatoblastoma, the most common form of liver cancer in children. Kelly and her family’s bravery and openness left an impression on so many people, including a young man named Chase, from Orlando.

Chase’s mom sent us this wonderful letter, and we just had to share it with you, our CKc warriors. Thank you, Chase, for recognizing children fighting cancer need our advocacy. We appreciate all our CKc warriors who help us in big ways, and small ways, to help spread the word about CKc and our mission!

I wanted to share a sweet story with you that shows the impact that Nolan continues to have in our lives, specifically Chase’s.

For math class, Chase’s teacher assigned a project where each child was given a million “imaginary” dollars. They had several things they had to do/buy with the money, including buy a house, a car and save four years of college tuition for a college of their choice. They also had to tithe 10% to their church and also donate to a charity of their choosing. Chase was so excited to go on Zillow to find his house and Carfax for his car. He sat at his laptop building his presentation and didn’t say much to me. And then he came and asked me, “Mom, what’s the name of that cancer charity that had the grant for Nolan? That’s who I’m donating to for my project.”

My heart melted. Unfortunately, it’s imaginary money. But he chose to buy a cheaper house and car so that he could donate $100,000 to Cannonball Kids’ cancer. Additionally, he took a moment during his PowerPoint presentation to tell everyone about what CKc does and why it’s important. And then urged them to give money for real, not just pretend. Many of the students remembered Nolan because they spent the year praying for him last year.

Nolan may have only been here three short years, but his impact is huge. I see it in my son who never had the opportunity to meet him and I see it in his classmates. I feel it in my own life. We will never forget your sweet boy and we will spread awareness about pediatric cancer whenever we can.

Michael and Melissa Wiggins, founders of Cannonball Kids’ cancer (CKc), recently met with Dr. Jacqueline Kraveka, an oncologist and associate professor at the Medical University of South Carolina (MUSC), which has the only pediatric cancer research lab in the state.

Dr. Kraveka is a member of Beat Childhood Cancer, serving on the executive and scientific committees. Beat Childhood Cancer is a group of 40+ research centers and children’s hospitals, headquartered at the Helen DeVos Children’s Hospital in Michigan, that offer an international network of childhood cancer clinical trials. The organization is chaired by Dr. Giselle Sholler, a recipient of a CKc-funded research grant.

Dr. Kraveka is most passionate about researching neuroblastoma and rhabdomyosarcoma and has several trials in development over the next year. CKc is carefully considering these trials as we look at funding additional research grants. Anca Dumitriu, the recently hired Survivorship Clinic Director, will have a follow-up meeting with the CKc team to discuss the potential for grant opportunities.

We look forward to growing this relationship and to the potential for funding new, innovative research. We will continue to keep you updated on these efforts.

“Dickie V”, the well-known college basketball broadcaster on ESPN, recently hosted Michael and Melissa Wiggins and their son, Cannon, for the second time at his annual gala to raise money for pediatric cancer research. The 13th annual event was attended by approximately 1,000 guests and raised a record $3.7 million. Since inception, the Dick Vitale Gala has raised close to $25 million for pediatric cancer research.

Cannon Wiggins had the honor of being one of 12 kids selected for Vitale’s All-Courageous Team, honoring children who are fighting cancer or who are cancer survivors. At six years old, Cannon is the youngest member of the team. Cannon became a cancer “survivor” in April, after beating neuroblastoma and continuing to show “no evidence of disease” (NED) for five years since diagnosis.

The day after the gala, Vitale hosted a private BBQ at his home for approximately 200 people, including top donors, celebrities and the families of the All-Courageous team. Melissa had the honor of being one of two guests selected to address the attendees. During her speech, she highlighted growing concerns for survivorship and issues associated with current treatments, so advancements can be made that lead to better, less-toxic options for children that don’t result in life-long side effects and illness. Melissa also shared that understanding the issue of survivorship will help change the status quo of future generations of survivors.

Cannonball Kids’ cancer thanks Dick Vitale for his dedication and passion for funding pediatric cancer research.

One of the key pillars of our mission statement at CKc is to “educate for change,” and it’s truly a phrase repeated daily in our office. At the beginning of May, CKc executive director Melissa Wiggins and CKc education director Kelly King traveled to South Florida to further our mission at Nova Southern University (NSU) in Ft. Lauderdale. NSU is the largest private university in Florida with an enrollment of 25,000 students, of which sixty-five percent are pursuing an education in healthcare professions. For the first time this year, NSU is introducing an M.D. course for 50 students to provide a specialized track. Melissa and Kelly presented to many researchers and the Interim Chancellor of the Health Professions Division, Dr. Irv Rosenbaum, about the need for further research focusing on survivorship and the life-long side effects and illnesses associated with current treatments for fighting pediatric cancer. NSU doesn’t currently conduct pediatric research, however, CKc sought out this opportunity to educate with the aim of inspiring NSU to consider new and innovative research possibilities for pediatric oncology. Melissa highlighted how this research can positively impact generations of survivors to come. The trip was a success and we look forward to partnering with NSU for future education and research opportunities.

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!

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