Tag: pediatric cancer

It’s Not About You… #StayHome

“It’s not about you!”

That’s something you can hear me screaming to my kids now and then. The world doesn’t revolve around them. It doesn’t revolve around me.

They have lots of questions these days. Usually, I have the answers. This time, I don’t have the answers. And that hurts.

But I have a job to do. They have a job to do. I think we all do.

Yes, we have to keep ourselves healthy, but if there was ever a time to practice what I preach, it is now. We have to do our part to protect those that can’t protect themselves.

Children’s cancer is not rare. Globally, there are thousands and thousands of kids with cancer. Today itself, many families will find out their little boy or girl has cancer.

As is, their options aren’t great. Most of the drugs used to fight kid cancers are made specifically for adults. These powerful drugs tear through their tiny bodies, destroying “the bad” and “the good” alike. The “good stuff” in their body that helps them fight sicknesses is ripped to shreds. They are immunocompromised.

Take my friend Chloe Bella for example. She’s 4 and going through treatment for JMML. She is fresh off a bone marrow transplant. She can’t go to church, school, or a playground. She has to stay at home. Her body is weak. Her body can’t fight things we can typically fend off with ease.

And now we have the coronavirus.

According to the latest information, the virus can remain on surfaces for days. It can be airborne for hours. This is what Chloe Bella and her family face — a relentless virus that has a history of killing those with compromised immune systems.

My 3 boys are healthy. If they get it, they will “most likely” be okay. So will my wife and I. But if we put ourselves in a position to catch it and spread it, we aren’t doing our part. That increases the odds that this deadly virus makes its way to Chloe Bella, or a child (or anyone) in a situation like hers.

It’s the job of my family to slow the spread. We need to buy time for a vaccine. We need to buy time for the virus to weaken. And we need to keep the hospital beds open, so those that need them will have a place to be treated.

Chloe Bella is in her house, playing with her toys. She’s with her mom, dad, and big brother. And they all have the same question: What if the virus gets to her?

Let’s not give it a chance. We have a job to do. Let’s do it together.


CKc Awards $680,000 in Pediatric cancer Grants

For Immediate Release, June 6, 2019

Contact:  Karen Revels, Executive Director

Email:     Karen.Revels@f1a.28e.myftpupload.com

Website:  f1a.28e.myftpupload.com

Facebook: @cannonballingcancer


ORLANDO, Fla. – Cannonball Kids’ cancer Foundation (CKc) today announced the awarding of $680,000 for six research grants to create 133 options for children battling cancer through clinical trials, programs, and laboratory research.

To date, CKc has awarded $1.9 million in pediatric cancer research and program support since the organization’s founding in 2015. Including this latest investment, CKc has created 385 treatment options for pediatric cancer patients in 26 U.S. states, plus Washington, DC, Canada, Scotland and Switzerland.

“These funds are critical to providing support to the underfunded world of pediatric cancer,” stated Michael Wiggins, Chair of CKc’s Board of Directors. “Thanks to our generous donors, and under the guidance of our Scientific Advisory Board, these funds will allow researchers the opportunity to conduct research that will someday secure less toxic, less painful therapies for children with cancer, and drugs and therapies that are developed specifically for children’s forms of cancer.”

CKc’s Scientific Advisory Board (SAB), comprised of leading investigators specifically in the field of pediatric cancer, guides the organization’s team and Executive Board in validating the merits of the science behind the grant proposals it receives. Collectively, the SAB members spend a total of nearly 50 hours of volunteer time each grant cycle reviewing and ranking grant applications to determine which grants to select and ensure CKc is funding the best possible research. This is the first of two invitation-only grant cycles in 2019, which are based on in-person meetings with researchers and hospital visits. Invitations for the second cycle will begin this summer.

Despite being the number one disease killer of children in the United States, pediatric cancers receive only 4% of federal dollars dedicated to cancer research. The task of financing research in pediatric cancer, and thus improving decades-old treatments, has fallen to individual donors through foundations like CKc. Pediatric cancer treatments have gone largely without progressive developments for over 20 years; and, for some forms of childhood cancers, the survival rate is still 0%. CKc has taken a “disruptor” approach to addressing these issues in pediatric cancer by funding primarily 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.

2019 Funded Grants

Michael Ortiz, Memorial Sloan Kettering Cancer Center – ($200,000)

Clinical Trial

A multi-center phase I study of Codrituzumab (GC33, RG7686, RO5137382) in pediatric patients with relapsed or refractory GPC3 expressing solid tumors

Glypican 3 (GPC3) is a protein that is important in fetal development but several pediatric cancers are able to inappropriately re-express this protein to help them grow faster. GPC3 is expressed in hepatoblastomas, yolk sac tumors and choriocarcinomas (which are specific types of germ cell tumors), most Wilms tumors, most rhabdoid tumors, and a minority of rhabdomyosarcomas. Codrituzumab is an antibody that binds to GPC3 and helps the body’s immune system to recognize these GPC3-expressing cancer cells. This drug was studied in a series of clinical trials in adults with liver cancer and was found to be safe. We are interested in determining whether codrituzumab will be safe when given to children with GPC3-expressing tumors that are not able to be treated with standard of care therapies. We will also investigate the ideal dose of codritizumab for children as well as specific blood and tumor markers to help determine which patients will derive benefit from codrituzumab. Once we determine whether and at which dose that codrituzumab is safe, we plan to open up a special arm for children with hepatoblastoma as we expect that targeting GPC3 is going to be particularly effective in these tumors. Given the important role of GPC3 in several pediatric solid tumors combined with the safety in adults, there is a compelling rationale to evaluate codrituzumab in this phase I clinical trial as it could lead to transformative changes in the treatment of several childhood cancers.

This first-in-children immunotherapy research study has the potential to impact up to 28 patients with recurrent or refractory disease from renal and hepatic tumors and will be accessible in New York, Georgia, and Ohio.

Dr. Ortiz was also awarded a Young Investigator Grant ($100,000).

Gregory Friedman, University of Alabama at Birmingham – ($200,000)

Clinical Trial

Phase 1 Trial of Engineered HSV G207 in Children with Malignant Cerebellar Brain Tumors

Current therapies for childhood brain tumors like surgery, chemotherapy and radiation are very damaging to the developing brain and can result in significant long-term brain injury. Furthermore, approximately 30-40% of children with brain cancer do not survive. Novel therapies are desperately needed to improve outcomes and lessen toxicities. Therapy with a cold-sore virus (HSV) offers an innovative, targeted, less-toxic approach for children with brain tumors. HSV has been successfully engineered to introduce mutations in the virus that prevent infection in normal cells while maintaining the virus’ ability to kill cancer cells and stimulate the child’s immune system to attack to the tumor. We are currently conducting a first-in-children Phase 1 trial of HSV G207 in brain tumors located in the upper part of the brain (cerebrum). We have safely treated 10 children and have seen evidence of significant responses. Our preclinical data indicates that tumor types that arise in the lower part of the brain (cerebellum) are more sensitive to killing by G207 than tumors in the cerebrum. Furthermore, few effective options exist for children with progressive cerebellum tumors. Therefore, we propose to conduct a first-in-human Phase 1 trial of HSV G207 in progressive malignant pediatric cerebellar tumors to determine the safety and tolerability of the therapy. Our secondary goals are to determine the effectiveness of the therapy and the immune response to the therapy. We will also explore specific features of the tumor and in the patient’s blood that may predict a treatment response to oHSV.

The novel drug administration of first-in-children viral immunotherapy in this research study has the potential to impact up to 15 patients with recurrent or refractory disease from brain tumors, which are the deadliest childhood cancers, and the study will be accessible in Alabama.

Sabine Mueller, Children’s Hospital Zurich – ($65,000)

Program Grant

PNOC Global

Brain tumors are now contributing to the most cancer related deaths in children. For many brain tumor types, decades of research and clinical trials have not achieved any improvement in the clinical outcome. Genome profiling of these cancers revealed that these tumors have different molecular subgroups. This means that while the tumors occur in the same age range, or location within the brain, the biology of the tumor may be individually different. Consequently, each patient (or groups of patients) will require personalized therapy based on their tumor molecular subtype (in comparison to the more generic tumor type). Because childhood brain tumors are considered rare, international collaborations are needed in order to study a larger patient population in the shortest amount of time. This will allow us to match specific subtypes of brain tumors to the adequate therapy, and change the current “One size fits all” approach. We founded the Pacific Pediatric Neuro-Oncology Consortium (PNOC) in 2013 with the goal of designing clinical trials based on each patients’ biology. To address the need for the international collaboration, we are expanding PNOC internationally (PNOC Global) to develop global collaborations and building infrastructures to conduct multi-center trials so that we can learn how to target the disease faster by integrating a larger patient population. Our first European based PNOC international site will be The University Children’s Hospital in Zurich, Switzerland, which is well positioned to contribute to the larger mission of PNOC as one the largest Children’s hospitals in Europe. Experiences gained by implementing PNOC trials in Zurich, will set the framework to continue onboarding of other European based clinical sites.

The international collaboration of this program will bring novel therapy options from the United States to Europe, and has the potential to impact up to 40 patients with recurrent or refractory disease from brain tumors, which are the deadliest childhood cancers.

Adam Kelly, Glasgow Children’s Hospital Charity – ($65,000)

Program Grant

CKc Foundation and Glasgow Children’s Hospital Charity have worked in partnership for the last two years. Thanks to the commitment and support of CKc Foundation we were able to expand our Schiehallion Clinical Trials Centre at the Royal Hospital for Children, Glasgow, by employing a Research Nurse focusing specifically on increasing the early phase clinical trials portfolio available to children and young people in Scotland who are diagnosed and treated for cancer and blood disorders.

As an extension to this we are now looking to increase the accessibility of our clinical trials by employing an Outreach Research nurse who will visit families in their own homes to support and help them understand clinical trials and treatment. The nurse will cover trial protocols with families in their own environment and in a way they understand. This will give parents control and an added level of support when clinical trials are an option for their child. The nurse will also discuss the treatment that will take place and this will result in more children accessing trials, more data being collated and an increased chance of survival or better quality of life.

The accessibility focus of this program grant initially created treatment options for up to 50 children with leukemia, lymphoma, neuroblastoma, and retinoblastoma by bringing novel clinical research trials from the United States to Great Britain.The continued implementation of this program will extend and enhance the institution’s ability to bring access to less toxic, life-saving treatments for those children.

Elizabeth Beierle, University of Alabama at Birmingham – ($50,000)

Laboratory Research

Hepatoblastoma (HB) is the most common primary liver tumor in children and its incidence is rising. Although survival rates for pediatric cancers have improved dramatically in the past 30 years, HB remains one of the most difficult childhood tumors to treat. Many children have disease that is resistant to standard treatments that will require novel, innovative, and targeted combinatorial therapies to effectively treat or manage their disease. We plan to demonstrate a driver role for a protein known as PIM3 kinase as a mechanism for HB chemotherapy resistance and recurrence. PIM3 is known to affect cancer growth in adult liver cancer and we have found that PIM3 is expressed in pediatric HB tumor specimens. Further, inhibition of PIM3 resulted in decreased HB tumor cell survival and tumor growth in animals. We believe that there is a small population of cells, called tumor initiating cells, which contribute to chemotherapy resistance and cancer relapse. We have made the novel observation that PIM3 affects this distinct population of HB cells and may render them more susceptible to chemotherapy. The aims of the proposed studies are to show that PIM3 does play a role in the maintenance of this special cell population and that targeting PIM3 results in decreased resistance to standard chemotherapies. We will use cultured HB cells and animals’ models to study these aims. The expected findings will be particularly exciting since there are inhibitors available and currently in clinical trials for PIM3 that could be rapidly advanced for use in pediatrics.

Few options exist for recurrent or resistant hepatoblastomas, and basic laboratory research must first be established and advanced to create clinical trials for children. This research funding enables Elizabeth Beirele’s first-of-its-kind postulation to be further developed in her lab in Alabama, bringing it closer to the important goal of treating children in the clinic.

In the photos (L to R): Dr. Sabine Mueller, Michael Wiggins, Melissa Wiggins, Dr. Julia Glade Bender, Dr. Michael Ortiz, Tony King, Kelly King, Cannon Wiggins (front).

About Cannonball Kids’ cancer Foundation:

Cannonball Kids’ cancer (CKc) 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. CKc was founded in June 2014 by Michael and Melissa Wiggins, parents of Cannon Wiggins, who was diagnosed with Stage IV high-risk neuroblastoma when he was just 20 months old. During Cannon’s treatment, Michael and Melissa learned very little time, effort and funding is devoted to finding cures for children’s cancer compared to adult cancers, and as a result, children are unnecessarily and unjustly lost. CKc aims to stop the tragic reality of children suffering and dying because of the lack of research in the world of children’s cancer treatments.

[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.]


Why I Must Be An Advocate for Change and Education

I had the pleasure of representing Cannonball Kids’ cancer (CKc) on Saturday, September 15th, at the first-ever Golden Warrior Festival in Apopka, Florida. This wonderful event was created to raise awareness of childhood cancer, and to beautifully recognize the brave warriors currently battling various childhood cancers in their community.

Day after day, these brave children face things that no child should ever have to know. They routinely undergo treatment that is unfortunately not able to be tailored to their specific illness, and they face the harsh side effects of medications designed to eradicate cancer in an adult many times their size. As I watched these extraordinary children experience each activity that was planned for them, they were so grateful, and so full of joy despite all they continue to face. It was truly such a blessing to witness them be able to simply be children, to see them smile for photos with their favorite superhero or Disney princess, to have their face painted, to enjoy cotton candy or a snow cone, and truly enjoy time spent with their families – I am absolutely in awe of these amazing children and the love and support of their families.

The coming together of this community to provide education on childhood cancer, and to rally around these amazing warriors was truly something to witness. In one afternoon, hundreds of eyes were instantly opened to the harsh realities of childhood cancer, and the dire need for change. All in attendance were able to see firsthand that that most unfortunately, childhood cancer is not rare. It does not pick and choose, it does not discriminate, and it continues to deliver devastating diagnoses on a daily basis. It takes events like this, foundations like CKc, and people who are driven to change the status quo, to make a difference. Being able to share CKc’s mission and accomplishments with members of this community, specifically the goal to create options together, when no more options are available, was incredible.  

This event had such personal meaning to me, as our family was not given the option to fight cancer. After our son Maxwell passed, we learned that he silently battled neuroblastoma in the three months we were blessed to share with him. There is no doubt in my mind that if we were blessed to have Maxwell with us much longer than we were, we would have fought as hard as we possibly could for him to beat this horrible disease.

While we truly feel in our heart that there is no blame, often hindsight is 20/20, and we can now look back and see that Maxwell exhibited some symptoms that would indicate the presence of neuroblastoma. It is understandable that physicians often times avoid immediately linking these symptoms to a possible cancer, because it would cause panic to the family and oftentimes there is no cause for concern. In our case, Maxwell had a protruding stomach – it was almost barrel-like. It was never identified as a potential issue; instead we were praised for our evident success in his feeding. Babies do not have developed abdominal muscles, so a large amount of babies do have large bellies. Maxwell also would sweat profusely. When we pointed this out, our concern was dissuaded, we were thankful when the concern was simplified to explain that sometimes babies just sweat, and it does not mean that there is an underlying issue. Only in hindsight can we identify the need for education on the telltale symptoms of neuroblastoma – and, just like any other disease, it is always better to be safe in ruling out this disease than not, as we will forever wonder what may have been if we were able to identify it, and fight, in an effort to save Maxwell’s life. Instead what started as a high fever weeks later led to an emergency room visit and discharge with a diagnosis of a ‘virus’ only to lose our son less than 48 hours later. Our family is forever changed and living daily with the devastating reality that our son is with God, instead of in our arms.

The never-ceasing love of a Mother for their child makes all things possible, and was what gave me the strength to represent CKc for this event. My heart went out to each warrior family that I had the privilege to meet, and as they shared their child’s stories with me, I was able to share Maxwell’s story with them, and explain how much CKc has come to mean to me. Our lives have been forever changed because of pediatric cancer, and now the fight is mine to continue for my son. Maxwell is my “why” – what drives me to volunteer for this extraordinary organization. I must be his voice; I must be an advocate for change and education. I know that I have found the perfect place in CKc to do these things and so, so much more. The Golden Warrior Festival was a huge success, and CKc was recognized for its help making such a wonderful event a reality. The positive feedback we received, the sincere interest in what we do, the individuals and families asking what they can do to join the fight, and the pride that I felt representing CKc for this event, was immeasurable. It truly was an experience that I will never forget. I did it – and you absolutely can, too!

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