Category: Update

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.]

###

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!

The Story Behind The Photo

Every photo has a story… This one is pretty unique and beautiful and sad and so powerful wrapped into one.

On April 1, 2017, Nolan King died unexpectedly after surgery. Nolan was 3. Nolan is a hepatoblastoma cancer warrior! A true real life hero! Nolan’s parents are photographed above with me and Dr. Elizebeth Beierle of UAB, a CKc funded researcher.

Now let’s backtrack to 2016 when I met the King Family! I met Nolan at Arnold Palmer Children’s Hospital – my Cannonball was having scans and Nolan was being pulled in his wagon by his Dad Tony, he was in chemotherapy treatment and was so sick, BUT what a beautiful smile he had. 

The last time I saw Nolan he and I played soccer with Richard Johnson our creative director at CKc. We laughed and played and I will forever remember Nolan that way!!!! He is my little soccer star! 

When Nolan relapsed Kelly his Mum called me and she said four words I will never ever forget! 

“He CAN’T die Melissa”

I promised Kelly he wouldn’t and that we would find a clinical trial together for relapsed hepatoblastoma and I would reach out to every researcher I knew and get Nolan what he needed. I believed that! That had been my experience with every Mum prior to Kelly! This time would be no different…I thought! 

It is painful to write these words… I failed! I couldn’t find anything… no trials for Nolan. 

On April 1 the night of CKc Gold Gala in Orlando my husband and co-founder Michael Wiggins with permission announced that CKc would fund a clinical trial for hepatoblastoma in Nolan King’s honor. 

Today we got to show the King Family what funding has done in basic research so that we may fund a trial. 

Personally, I made it my mission to keep our promise! Literally, hundreds of hours to get to this photograph and I would do it all over again for that little man I played soccer with just two years ago. 

I couldn’t keep my promise to Kelly but I can to Nolan and his two little brothers whom I love, Carson and Spencer! I promise that someday kids won’t die of hepatoblastoma! That someday soon there will be options for kids like Nolan! 

CKc Makes News with Novel Emmi-Grace Applesauce Trial

CKc co-founder Melissa Wiggins and pediatric cancer advocate Monica Angel were in Tampa, Florida, recently for a #nomoreoptions event. Approximately 50 people attended the small group gathering which focuses on educating others on why advances need to be made in the field of pediatric cancer treatment to not only create more survivors, but to also increase the quality of life for those children. The event also highlighted a CKc-funded trial that involves an innovative way of administering chemotherapy to a child under three years old. The trial is named after Monica’s daughter, Emmi-Grace.

 

BAYNEWS9 web story
ABC
CBS
Spectrum News13

CANNONBALL KIDS' CANCER FOUNDATION,
POST OFFICE BOX 547797
ORLANDO, FL 32854
(321) 325-5392
INFO@CANNONBALLKIDSCANCER.ORG

Follow us


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.