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.

#StayHome

CANNONBALL KIDS’ CANCER FOUNDATION AWARDS $565,000 IN INNOVATIVE CANCER RESEARCH GRANTS

PRESS RELEASE
For Immediate Release, January 8, 2020
Contact: Karen Revels, Executive Director
Email: Karen.Revels@cannonballkidscancer.org
Website: www.cannonballkidscancer.org
Facebook: @cannonballingcancer

CANNONBALL KIDS’ CANCER FOUNDATION AWARDS $565,000 IN INNOVATIVE CANCER RESEARCH GRANTS

ORLANDO, Fla. – Cannonball Kids’ cancer Foundation (CKc) today announced the awarding of $565,000 for four research grants to create 200 options for children battling cancer through clinical trials, programs, and young investigators.

To date, CKc has awarded $2.4 million in childhood cancer research and program support since the organization’s founding in 2015. Including this latest investment, CKc has created 593 treatment options for childhood cancer patients in 25 U.S. states, plus Washington, DC, Canada, Scotland and Switzerland.

“These funds are critical to providing support to the underfunded world of childhood 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 childhood 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 most innovative research. This is the second of two invitation-only grant cycles in 2019, which are based on in-person meetings with researchers and hospital visits. Invitations for the first cycle of 2020 will begin in January.

Despite being the number one disease killer of children in the United States, childhood cancers receive only four percent of federal dollars dedicated to cancer research through the National Cancer Institute. The task of financing research in childhood cancer, and thus improving decades-old treatments, has fallen to individual donors through foundations like CKc. Childhood 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 is transforming this reality by funding primarily innovative, first-of-its-kind research and educating the public on the realities of childhood cancer, both the rate of survivorship for various cancers and the impact of childhood cancer treatments on survivors.
2019 Cycle 2 Funded Grants

Dr. Theodore Johnson, Children’s Hospital of Georgia and Georgia Cancer Center – ($200,000)
Santiago Estevez Upfront and Progressive Brain Tumor Immunotherapy Trial

Dr. Johnson recently completed the CKc-funded, first-in-children Phase 1 study of the drug Indoximod, which is an oral immunotherapy which was used in conjunction with chemotherapy and individualized radiation plans. The combination was well tolerated and study analysis showed Progression-Free Survival (PFS) markedly superior to historical data using chemotherapy alone. Now, Dr. Johnson is using a similar multi-modal method to move his study to Phase 2, with the hope of fundamentally altering how we treat children with recurrent brain tumors by using indoximod-based therapy as a front-line treatment. Dr. Johnson has successfully secured partial funding from the NIH/NCI for the Phase 2 trial, but the NIH R01 grant funding only provides a portion of the total cost to deliver this experimental immunotherapy to these fragile patients. The CKc grant has provided critical gap funding to cover necessary aspects of the trial that the federal government’s grant does not cover. The trial will provide 190 brain tumor patients with an option for treatment who would otherwise be told “there are no more options.”

Santiago Estevez is an eight-year-old boy from Orlando, Florida who has been in treatment for Medulloblastoma since he was four. Unfortunately, Santiago received too much radiation to his brain; and, as a result, has been paralyzed from the neck down. He was successfully treated on Dr. Johnson’s Phase 1 and Emmi Grace Applesauce trial before his disease progressed again. The medication was administered via his g-tube, making him one of the first patients to ever receive immunotherapy via a g-tube. Santiago’s Mom says, “Our road is not over, but thanks to organizations like CKc, there is hope for families like ours across the globe.”

Dr. Holly Meany, Children’s National Medical Center – ($200,000)
Hannah Harger Relapsed Wilms Tumor Trial

Children who relapse with Wilms tumors have a dismal prognosis and there are few targeted therapies or clinical trials available. Dr. Meany’s trial aims to fill this critical need with use of a therapy similar to the celebrated CAR-T therapy, which has not had thrilling results in solid tumors like it has in blood cancers. Dr. Meany’s protocol is a “first in human” approach to evaluate the targeting of multiple tumor associated antigens with T cells and combining it with chemotherapy in a novel way. This Phase 1 clinical trial will create a treatment option for 10 children with relapsed Wilms tumor. In the future, this strategy may also be exploited to enhance the efficacy of immunotherapy in many other solid tumors that express these tumor antigens.

Hannah Harger is a 12-year-old three-time survivor of Wilms tumor from Orlando, Florida who is featured in CKc’s “This is Treatment” campaign. There were no novel therapies available to her during her multiple iterations of treatment, which has left her with a multitude of side effects from toxic chemotherapy. This grant was awarded in her honor.

Dr. Jared Rowe, Dana Farber Cancer Institute – ($100,000)
Young Investigator Grant

Pediatric kidney cancer, especially with types rarer than Wilms tumors, remain a significant cause of cancer related morbidity and mortality in children. Harnessing the immune system to treat cancer is an exciting and rapidly growing field already demonstrating improvements in curing cancer. However, these therapies are failing when applied to children because of a lack of understanding of immune responses in childhood cancers. Dr. Rowe is using advanced technologies to analyze immune cells within tumors at the level of individual cells. This characterization will provide an unparalleled view into the function of immune cell populations in childhood cancer. This research will perform the most comprehensive analysis to date of the immune response in an important group of pediatric cancers. By understanding the immune response to pediatric kidney cancers, we can begin developing pediatric-specific immune based therapies to increase the rates of cures and limit side-effects. Dr. Arlene Sharpe, Immunology Department Chair at Harvard Medical School, noted, “His thoughtful approaches to addressing scientific questions, passion for science, and strong motivation are a winning combination. I have trained many talented fellows over the past 27 years, and Jared ranks amongst the very top tier of my trainees.”

Dr. Amy Smith, Dr. Judith Simms- Cendan and Laura Wieber, Orlando Health Arnold Palmer Hospital for Children – ($65,000)
First Central Florida based Oncofertility Program for Childhood Cancer Patients

Infertility remains a persistent and major concern for childhood cancer survivors. Early intervention is essential to protecting reproductive health and the cornerstone of successful intervention is a nurse patient navigator to educates families on their options and make a family-centered, timely plan. CKc’s funding will help support two goals: 1) the hiring of such a navigator at Orlando Health Arnold Palmer; and, 2) the creation of a multidisciplinary service team for reproductive preservation and an ovarian tissue cryopreservation opportunity lead by our pediatric gynecology physicians for pre-pubescent females. This effort will make Orlando Health Arnold Palmer the host of the first dedicated pediatric oncofertility program in central Florida.

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, Washington 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.]

LOCAL NONPROFIT ADVANCES FEDERAL EFFORTS TO RESEARCH CHILDHOOD CANCER

FOR IMMEDIATE RELEASE
December 18, 2019
Contact: Karen Revels, Executive Director
Email: Karen.Revels@cannonballkidscancer.org
Website: www.cannonballkidscancer.org
Facebook: @cannonballingcancer

LOCAL NONPROFIT ADVANCES FEDERAL EFFORTS TO RESEARCH CHILDHOOD CANCER

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.]

This is MY Treatment

It is difficult to imagine who I would be today without cancer. The carefree teenager I was when diagnosed quickly learned to navigate the waters on the edge of life and death. Everything before cancer was easy: sports were easy; studying was easy; family, friendships, and relationships were easy. Life was easy. Even taking a breath was easy and required no thought or effort. Cancer and its treatment, for me, required ease to become a conscious effort.

In 1994, the year I turned 16, radiation destroyed my Hodgkin’s Lymphoma. Now, as a 41-year-old male, I don’t have to worry about Hodgkin’s anymore. At this point, I worry about tumors and damage caused by my treatments.

While radiation destroyed my cancer, it destroyed other parts of my body as well. Some effects were immediate, while others took, and continue to take time to develop.

During treatments, I had the “common” side effects of radiation. My skin was burned in places, and the smell of dead and dying skin will never leave my memory. My mouth, esophagus, stomach, and colon all were burned, scarred, and eventually developed sores and ulcers. My lungs are scarred, my thyroid is destroyed, along with my spleen. My spinal cord accidentally received too much radiation in one part which caused me to have some short-term side effects (L’Hermitte’s sign), and longer-term ones where my nervous system just doesn’t always relay information the way it should.

Even though 25 years have passed since my treatment, the side effects are still with me. Having no thyroid requires a daily dose of medication; the lack of a functioning spleen means I catch most of what I am exposed to, especially with young kids in school: colds, the flu, stomach bugs, pneumonia, and active tuberculosis are but a few on the list of diseases I have “caught.” My heart and cardiac system are checked often to make sure my heart valves continue to work properly. There already have been some cardiac scares, and there are some electrical conductivity problems that have manifested themselves. The problem, however, is that there is no simple answer as to if and how the radiation caused this. Some doctors are convinced, others are unconvinced and many of my ailments remain unexplained.

I have to conduct self-breast exams, as well as testicular exams, and lymph node explorations. I have to examine my body for any lumps, bumps, or anything else out of the ordinary. No matter how far I have come since my last day of radiation therapy, it takes a millisecond to be thrust back in that doctor’s office where I first received my diagnosis. The fear can be suppressed, but I have still not been able to make peace with it. Nor have I been able to make peace with the fatigue that can take over my life. It comes and goes and has become my “common” side effect. The long-term effects are evident in the multiple secondary cancer scares I have had: testicular cancer, thyroid cancer, skin cancer, leukemia, lymphoma relapse, and lung cancer. All require testing, further testing, monitoring, or treatment for it being something else. 

I am alive thanks to radiation and I am destined to forever worry about the consequences of my treatment. I am one of the few very lucky ones. Neither my cancer nor my treatment killed me. But there is a price to be paid. I am always reminded in subtle, and not-so-subtle ways that I survived and should, therefore, not complain. Maybe it was the time when I was treated, but having cancer was something you shouldn’t talk about, especially if you survived; I somehow became convinced that my silence equated gratitude, and my silence was the price I paid to be kept safe from the effects of my treatment.

Both cancer and my treatment continue to have lasting effects on my physical and mental wellbeing. I have had my peaks and my valleys; I have collapsed while throwing up blood from the bleeding ulcers in my stomach, and I have crossed the finish line after a marathon. I can be scared, and I can be brave. I can dread the future, and I can be hopeful for the same. There is no such thing as a carefree life, although I will continue to seek out those moments where life seems perfect and I am free, if for a second, of fear. It is in those moments where I find the courage to keep going, take the dose Synthroid, submit to another scan, have more bloodwork done, breathe and wait for the results to come.

I am a son, a brother, the husband to a beautiful wife, and the father of three beautiful children, I am a survivor who hopes that we can find better ways to treat pediatric cancers.

Yesterday a child died! Actually , horrifically 7 died!

But one that I loved and cherished died! One that I’ve played dinosaurs with, one that I’ve ate lunch with! His name is Coulter – he is undoubtedly the essence of what bravery is meant to mean.

4 years ago he was given a month to live – his parents told to take him home to die! Now having spent time with his parents I know that was never an option for them! They looked, searched did everything they could to find an option for their boy! They did! It was CKc ‘s first trial they helped fund! I will never forget leaving Florida driving to Georgia and handing over $100,000 – it was at the time every single penny our foundation had and our team didn’t care – there will always be MORE money – there will never be another Coulter! Never! Yesterday my friend died! Coulter died! So young!

I was sobbing in the bathroom to my mentor there may have been cussing involved so I had the door locked so the boys couldn’t hear me. I got out of the bathroom and they had spilled liquid all over the living room and my notebook. It’s fair to say my reaction was poor! Unjustified and not kind! The reality is I refuse to say I will never get close to another child fighting or this is too hard I can’t! I will never ever stop this work! Ever! But I must heal wounds – that means admitting that guys it rips my guts out! It feels like they get ripped out – a million people stomped on them and then they are given back to me! I want to be better so I can do more! But wounds need time to heal. So we can do better!

We all have wounds! Heal them so you don’t hurt others! I’m not sure I’m entirely healed from my own son’s cancer but darn it I’m motivated by the need to do better ! Talk to someone! Journal! Admit it hurts – it doesn’t make you weak (despite what you were told growing up). See a counselor! We all have pain! Heal it! It’s the only way! Today I try to do better for Coulter! For my boys! And for my marriage! I love you, Coulter! I will never give up – you taught me that!

CKc Awards $680,000 in Pediatric cancer Grants

For Immediate Release, June 6, 2019

Contact:  Karen Revels, Executive Director

Email:     Karen.Revels@cannonballkidscancer.org

Website:  www.cannonballkidscancer.org

Facebook: @cannonballingcancer

CANNONBALL KIDS’ CANCER FOUNDATION AWARDS $680,000 IN PEDIATRIC CANCER GRANTS

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.]

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ORLANDO-BASED PEDIATRIC CANCER FOUNDATION ALIGNS WITH LOCAL CONGRESSWOMAN TO PRIORITIZE FUNDING FOR DEADLIEST PEDIATRIC CANCERS

ORLANDO, Fla. – Orlando-based nonprofit, Cannonball Kids’ cancer (CKc) Foundation, announced today that Report Language drafted by the organization and submitted to the House Appropriations Committee by Representative Stephanie Murphy was adopted on May 8, 2019, along with the FY 2020 Labor, Health and Human Services and Education Appropriations 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 Congresswoman Stephanie Murphy’s strong support and know that her prioritization of this issue will have a positive impact on kids battling cancer.” 

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 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.

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.]

A Friend, A Wreath, and HOPE

I’ll never forget it.

I think it was a Saturday and Cannon was unexpectedly admitted to the hospital. I called Melissa to ask if she wanted visitors and she kindly declined as there was still testing to be done. We kept in contact and several days later: the unthinkable.

Neuroblastoma.

A type of childhood cancer. How can this be?? This young mother had just moved from Scotland, married a wonderful man, had Cannon and was 9 months pregnant with twins. All in a span of 3-4 years. Now this? 

After the shock wore off, Michael and Melissa went into warrior mode. They found the best treatment for Cannon, traveling all over the country. Friends in Orlando did what we could to support the family. Cannon’s older sister, Olivia, became like a family member to us; we love her dearly.

We all wanted to support Cannon and the Wiggins family in their fight against pediatric cancer, but many of us weren’t sure how. Then in 2014, Michael and Melissa founded Cannonball Kids’ cancer (CKc) Foundation to fund pediatric cancer research.

My family’s way of honoring Cannon was through the purchase of a CKc wreath that was being sold on social media. I vowed that this wreath would be outside our door until Cannon hit the momentous five-year mark of being cancer-free. The wreath has only been taken down during Christmas when our Christmas wreath watches over CKc’s special place in our home during the holidays. This round object with its ribbons and gold glitter has so much meaning. It represents the fight of a little boy whose parents never gave up hope. It represents a community coming together to help a family in need. It represents all children suffering from horrendous childhood cancers. And, at the same time, it represents HOPE. Hope that someday these terrible diseases and these family’s sufferings may be eradicated.  

May 20, 2019 will be a celebratory day! It is the day our CKc wreath comes down in honor of Cannon being cancer-free for five years!!! I will miss seeing Cannon’s wreath and all that is represents, however I will be filled with joy and thanking our Lord for watching over our little fighter!”

Newest Recipient of a Young Investigator Grant Announced!

Dr. Michael Ortiz from Memorial Sloan Kettering in New York City is CKc’s newest recipient of a Young Investigator grant! Early in his career, as the Chief Fellow at MSKCC, he treated Nolan King, the son of Research Director, Kelly King.

Since Nolan’s passing in April 2017, Kelly and Melissa Wiggins have remained connected with him and visited Dr. Ortiz to discuss his research and career goals, and how CKc could assist him in getting his research into the clinic. Because pediatric cancer researchers must search to find their own funding for clinical trials and research to achieve this type of goal, CKc is dedicated to encouraging bright, eager and committed talent like Dr. Ortiz to stay in the field in spite of its challenges by providing salary coverage.

Encouraging those who show this type of promise is an essential part of changing the status quo for kids battling cancer, and this $100,000 award, payable over three years, will help protect Dr. Ortiz’s time in the lab, and assist him in developing his first clinical trial for high-risk solid tumors including hepatoblastomas, sarcomas, and Wilms tumors. He’s already taking huge steps in this direction by being invited to apply and submitting a clinical trial grant application to CKc in the first grant cycle of 2019!

A strong mentor relationship with a leader in the field is an essential part of early career development, and a requirement for our grant funding. Dr. Ortiz’s mentor, Julia Glade Bender, MD, Vice Chair for Clinical Research at MSKCC, told us this: “After 2 decades in the field of pediatric oncology drug development, it is strikingly apparent that Dr. Ortiz is the ‘real deal.’ He possesses the three most critical elements of success: passion, intellect and tenacity. If provided with support at this critical stage of his development, I am certain he will achieve national recognition and earn his place amongst the rising stars in translational pediatric oncology.”

“This grant would provide me with the support needed to continue my pursuit of novel targeted therapies for high risk pediatric solid tumors … and facilitate my ultimate goal of becoming an independent translational clinician scientist.”
– Michael Ortiz, MD

CKc advances research and education initiatives in DC!

When we told you CKc was growing, we meant quickly! And Team CKc, new staff as well as dedicated volunteers, didn’t let any grass grow under their feet. If cancer doesn’t rest, neither will we!

CKc on the road to DC

First stop: Education on Capitol Hill (go big or go home, right?)

An integral part of CKc’s mission is to educate for change, and that includes Congress! Team CKc met with Greg Gill at the Venable LLP office, our pro bono lobbying firm,  to strategize advocacy for this year. We also met with 11 congressional offices, including six in the senate, and five in the house. The highlight of this trip was that we were able to meet with DC-based staff from every one of our local representatives, including Senators Marco Rubio and Rick Scott, and Representative Val Demings. This also included personally meeting Representative Stephanie Murphy, who’s district houses the CKc office.

All of these offices have pledged their support to help us further some legislation regarding the deadliest cancers, which Team CKc will now continue working on from Orlando.

Next stop: Research at Children’s National Hospital

Team CKc met with four researchers at Children’s National Hospital to learn about their current and future research projects. Two researchers specialized in brain tumors, one solid tumors and one in genomics. CKc carefully vets potential grantees and invites only the most innovative to apply! The group discussed possible grant funding and the CKc grants application process. We are excited about the possibilities at Children’s National Hospital!

Last stop: Collaboration with OpenWater, Arlington, VA

Speaking of the grants process, Team CKc met with staff from OpenWater, the company providing CKc’s new grant application and management software. This software was put into effect in January to help streamline and automate the application, review, and follow-up processes for all research grants. The next step in the growth of CKc, this software ensures we can continue to be good stewards of the investment our donors make in the fight to cure childhood cancers.

Are you exhausted yet? Grab some coffee… we’re just getting started!

CANNONBALL KIDS' CANCER FOUNDATION,
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