January 13, 2017 -- Cannonball Kids' cancer Awards $100,000 Grant For Promising Trial To Treat Deadly Pediatric Cancer With No Long-Term Surviors

ORLANDO, Fla., January 13, 2017 -- Due to the success of Cannonball Kids’ cancer (CKc) Foundation’s first-ever end-of-year marketing campaign in 2016, the foundation announced a $100,000 grant to fund a clinical trial for DIPG (Diffuse Intrinsic Pontine Glioma), a deadly pediatric cancer with zero long-term survivors. The trial is the first-of-its-kind in the U.S. and will be led by Dr. Sabine Mueller at the Benioff Children’s Hospital, University of California, San Francisco. Over the next two years, up to 18 children on the trial will receive the potentially life-changing treatment for DIPG. This trial has a promising outlook for treatment of DIPG, and could impact the drug delivery system for other types of brain cancer as well, saving more children’s lives. The grant was awarded in honor of Gabriella Miller of Washington D.C., who would have turned 14 this month. Gabriella passed away in 2013 at the age of nine from DIPG, just 11½ months after diagnosis.

“It is unconscionable that in 2017, we still have a type of pediatric cancer that has zero survivors. In fact, most children diagnosed with DIPG will die within one year of diagnosis. We won’t accept that. We want to change that statistic,” said Melissa Wiggins, Cannonball Kids’ cancer Foundation’s co-founder and executive director.

Over the last twenty years, the prognosis for DIPG has remained status quo. This new trial involves using a new drug delivery system along with a HDAC inhibitor drug (Panobinostat) that determines which genes turn on and off. This treatment optimizes direct delivery of the drugs to the whole tumor between the cells. The drug has a promising outlook for treatment of DIPG and the goal is to create more hope for other brain cancers with this new approach.

“The support from the Cannonball Kid’s cancer Foundation is critical and sets the stage for the development of an exciting and promising new therapeutic option for children with pontine gliomas – one of the most devastating cancers any family can experience. Without their support, we would have not been able to move this development forward so quickly,” said Dr. Mueller.

Including this DIPG trial, CKc has funded a total of five clinical research trials since the foundation began funding trials in 2015, for a total of almost $300,000 in grants awarded. The trials are providing almost 40 children in 10 states with access to “bench-to-bedside” treatments that could help give the chance to live to children who have previously been told there was nothing more to be done to save them.

“Our mission is to fund innovative and accessible research for children to provide better treatments and quality of life,” said Michael Wiggins, CKc co-founder and chairman of the board. “If proven safe through the trial, this cutting-edge treatment can be used not just for DIPG but for all kinds of brain cancer thus impacting and, most importantly, saving the lives of more children.”

Cannonball Kids’ cancer was founded in June 2014 by Michael and Melissa Wiggins, parents of Cannon Wiggins. When Cannon was 20 months old, he was diagnosed with Stage IV high-risk neuroblastoma. During Cannon’s treatment, Michael and Melissa learned 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.

August 19, 2016 -- Cannonball Kids' cancer Aims to Improve Survival Rates Of Children Diagnosed With High-Risk Or Relapsed Neuroblastoma By Awarding A $75,000 Grant to Michigan Research Team


ORLANDO, Fla., August 19, 2016 – Cannonball Kids’ cancer (CKc) is providing hope to as many as 15 children who have little or no options for survival by awarding a $75,000 grant for a first-of-its-kind trial for children diagnosed with a particularly deadly type of pediatric cancer. High-risk neuroblastoma accounts for 15 percent of all pediatric cancer deaths. Of the children who achieve remission, 50 percent will relapse with a five year survival rate of just 10 percent. Grant recipient, Dr. Giselle Sholler, M.D., MSc, and her team at the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) in Michigan, have completed phase one of this novel trial and will move into phase two with the help of the CKc grant. The grant also will assist in the expansion of the trial into eight new sites around the United States, including Arnold Palmer Hospital for Children in Orlando, allowing easier access for children to participate in the trial.
 
The grant was awarded in honor of Ava Crowley, a seven-year-old girl from South Florida. Ava was diagnosed with neuroblastoma when she was two years old and has been fighting a relapse near her aorta for the past 18 months.  
 
“The goal of this trial is simple. We want to save lives of kids who have little to no options for survival,” said Melissa Wiggins, CKc Co-Founder. “Every parent who hears the word ‘relapse’ knows the chances for survival are tough. We want to change the statistics. Relapse doesn’t need to mean death anymore.”
 
Patients participating in this clinical trial will receive the drug DFMO, which inhibits cell growth of cancer cells, in combination with Bortezomib, a drug that has been approved for treatment of adult cancers but not yet tested on children. Dr. Sholler’s phase one study of DFMO on relapsed neuroblastoma showed a significant increase in survival rates. With the Phase Two trial, she hopes to improve upon the results of Phase One trial by adding the Bortezomib treatment to synergize with DFMO with little pain and reduced side effects for the child.  
 
The grant also will assist in allowing this trial to open in eight additional sites around the United States. This is important because it allows easier access for eligible children to participate in trial at a site that may be in their hometown or closer to home, easing travel expenses and stress for families.  
 
“Everyone at NMTRC is very thankful to Cannonball Kids’ cancer for this incredible donation,” said Dr. Sholler. “Together we will bring this new therapy to children fighting neuroblastoma giving hope to families and their physicians. With DFMO, we have seen some children with relapse neuroblastoma cured and we hope to see more with this study.”  
 
The money funding this grant was raised at CKc’s first-ever Gold Gala in Orlando on April 23, 2016. Less than three months later, the money is funding high-impact and innovative research. CKc has funded approximately $300,000 in research trials since in it earned its 501(c)(3) non-profit status in January 2015.  
 
“As we always say, funding is the key,” said Ashley VanDerMark, CKc Chief Executive Officer. “Science is improving and there are some really innovative solutions being developed. But, they won’t move beyond the labs if the funding isn’t there. This is why CKc exists, to put money in the hands of researchers who are moving the needle and impacting lives of children who have little to no hope.”
 
CKc recently received a fundraising efficiency rating of 96% for the last tax year, 2015, meaning $0.96 of every dollar raised went towards funding pediatric cancer research. Toprated charities must earn an 80% rating or higher.  
 
Cannonball Kids’ cancer was founded in June 2014 by Michael and Melissa Wiggins, parents of Cannon Wiggins. When Cannon was 20 months old, he was diagnosed with Stage IV highrisk neuroblastoma. During the treatment of Cannon, Michael and Melissa learned so 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 is intentionally lowercase to give the word cancer an inferior status.]
 

July 20, 2016 -- Cannonball Kids' cancer Awards $75,000 Grant for Immunotherapy Trial Using Novel Stem Cell Manipulation Technology That Could Save Lives For Children Fighting Cancer


ORLANDO, Fla., July 20, 2016 – Up to thirty-six children will now receive a new chance at surviving deadly, relapsed tumors due to a $75,000 grant recently awarded by Cannonball Kids’ cancer (CKc) to Dr. Mario Otto and his team at University of Wisconsin-Madison Carbone Cancer Center for a novel immunotherapy trial involving a ground-breaking stem cell transplant component. The clinical trial is focused on children with hard to cure tumors such as rhabdomyosarcoma, neuroblastoma, and Ewing sarcoma, and certain leukemias and lymphomas , that have not been controlled by conventional cancer therapy. The grant was awarded in honor of Trevor Sheerer, an eight-year-old boy from Lake Nona, Fla., who passed away April 30, 2016, after his battle with relapsed rhabdomyosarcoma.  
 
“This trial is a novel translational type trial, a trial that is bench-to-bedside,” explained Melissa Wiggins, CKc Co-Founder. “These are the trials CKc believes in. To us, there is nothing else. What is the point of science staying in the lab? Let’s help kids live today!”
 
Patients participating in this clinical trial will be treated with a stem cell transplant using cells collected from one of their parents. The cells from the parent (“graft”) will be prepared in a new way that allows helpful immune cells to be transplanted along with the stem cells. These important immune cells are very efficient at fighting infections and killing remaining cancer cells almost immediately. In addition, the cells that cause graft-versus-host disease (GvHD) and other horrific transplant-related reactions are removed, making the transplant safer and less torturous for the child to endure. The trial participants also will receive a medication that further stimulates the immune system to fight the cancer.  

Dr. Mario Otto, M.D., Ph.D., is the principal investigator for this Phase I trial, which will be implemented at the highly-regarded American Family Children’s Hospital at the University of Wisconsin Hospital and Clinics. The UW Carbone Cancer Center is one of only 45 National Cancer Institute (NCI) designated comprehensive cancer centers in the United States. Dr. Mario Otto’s team includes Dr. Paul Sondel, M.D., Ph.D., world-renowned for his work in the field of immunotherapy since 1969 and integral in increasing survival rates for neuroblastoma from 20 percent to 50 percent.  
 
“We are very grateful and humbled for the support of our clinical study by CKc,” stated Dr. Otto. “They understand the lack of sufficient funding for pediatric clinical cancer trials slows us down in finding new and better, less toxic treatments for kids with cancer, and CKc has decided to tackle this terrible situation.”
 
The money which funded the Trevor Sheerer Grant was raised at CKc’s first-ever Gold Gala in Orlando on April 23, 2016. Less than three months later, the money is funding bench-tobedside research. CKc has funded approximately $300,000 in research trials since in it earned its 501(c)(3) non-profit status in January 2015.  
 
“We are once again proving how serious we are about funding research by immediately funneling generous donations right back into the pediatric cancer community in order to get to a cure,” said Ashley VanDerMark, CKc Chief Executive Officer. “Money in the bank doesn’t save lives. CKc has always had a priority to put the money we raise into the hands of researchers as soon as possible to provide hope to children who may have been told previously there are no more options to help them.”
 
CKc recently received a fundraising efficiency rating of 96% for the last tax year, 2015, meaning $0.96 of every dollar raised went towards funding pediatric cancer research. Toprated charities must earn an 80% rating or higher.  
 
Based in College Park, Fla., Cannonball Kids’ cancer was founded in June 2014 by Michael and Melissa Wiggins, parents of Cannon Wiggins. When Cannon was 20 months old, he was diagnosed with Stage IV high-risk neuroblastoma. During the treatment of Cannon, Michael and Melissa learned so 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.  
 
[The “c” in cancer in the name Cannonball Kids’ cancer is intentionally lowercase to give the word cancer an inferior status.]

June 11, 2016 -- Cannonball Kids' cancer Funds Emmi Grace Applesauce study

 

ORLANDO, FL -- June 11, 2016

Original Facebook (FB @cannonballingcancer) post describing the Emmi Grace Applesauce Study and CKc's inspiration for the trial. Post is authored by CKc Co-Founder Melissa Wiggins.

Emmi Grace has gone to Heaven. As her mum Monica said "She is a Saint, she is white as snow." She was perfect! She is perfect!! She was 5 months old.

Science failed Emmi. Lack of funding for the RIGHT science failed Emmi!!!

We MUST do better!!! We MUST take the action!

I wish we could have funded more research for Emmi. Wish??? Wish isn't strong enough for what I want!!! All I know is her parents Monica and Ryan are fighters like Emmi. They cannot un-see what she went through and they will change it!! They will!!! They are strong like Emmi! Just wait...

My heart aches! My body hurts! The pain of what Emmi, Monica, Ryan and all the family is enduring is unbearable to even imagine!! But this is not about me, this is about what the @#*! do we do to change this!

What do we do to change the fact that only 3 drugs have been approved by the FDA for children in the last 30 years?

What do we do about the fact that Emmi received Cisplatin, a drug designed for male testicular cancer. That's right, male testicular cancer. Discovered in 1965!

This is not the oncologists fault! They have a toolbox! And their toolbox sucks!!! They don't have the right tools to fix Emmi! So we must do better! We must FUND research for CHILDREN!!! Why? Because children are NOT small adults! Their organs cannot handle it like adults, and if they happen to survive cancer, the side effects will haunt for the rest of their lives!!! That's a fact!! I see it with my son! I have lived it and live it with him everyday! Speech, hearing, eye, digestive, height, fertility - all issues we deal with or will deal with!!! That's NOT OKAY!!!

At Arnold Palmer Hospital for Children, our local hospital, 7 children have died in the last six weeks! Stop telling me it's rare!!!! It's not RARE!!!!! It's everywhere!!!!! And I'm sick of it taking my friends' children! Our children! Your children! Your grandchildren! Your neighbors' children! Our future!!!

Please please pray for my friend Monica! For her husband Ryan! For their baby girl Emmi and the ENTIRE family!!!! This is not how it's meant to be!!!!

I wrote this post below before she went to Heaven.

I have fire in my belly. Hands down, without question, my absolute favorite part of working in the pediatric cancer world is the idea of saving lives. I mean, what else is there?

As I type this post my friend Monica just sent me a beautiful picture of Emmi Grace. She is perfect! Beautiful. She is 5 months old. She has brain cancer. She is dying.

Monica and Ryan don't know how many more days or hours they will have with their baby girl. But they know it's not long. Can you imagine? I can't.

So instead... I do what we can and what Team CKc has made possible and I drive to Augusta, Georgia on Monday.

When Emmi was diagnosed, Monica and Ryan, like most parents, researched so much to find treatments and help for their baby girl. Sadly for ATRT brain cancer, there isn't much. In fact, they couldn't find one trial that would allow a child under age 3 on it. So what were they to do?

When Monica explained this to me, I immediately picked up the phone to Dr. Johnson on our scientific advisory team and asked him why! He explained to me that children under three cannot swallow the horse-sized pills in many trials. In fact, the very trial we funded at Georgia Cancer Center had to REJECT children on the trial (which included ATRT kids) for that VERY reason. Dr Johnson and our CEO, Ashley VanDerMark, had already discussed some possible ways to prevent this, but of course it all came down to money and finding the funds.

On the night of the CKc Gold Gala, we knew we had made over $150,000. That would allow us to fund $75,000 for a relapsed rhabdomyosarcoma trial in honor of Trevor Sheerer and $75,000 for a relapsed neuroblastoma trial in honor of Ava Crowley. We knew we could also fund Dr. Johnson's Applesauce Trial.

On Tuesday, not only do I get to meet some of the 9 patients on the trial we helped fund last year, but I also get the absolute honor and privilege of presenting a check for the

"Emmi Grace Applesauce Trial"

This trial is a new trial that is another arm to our original trial. It will test the efficacy of the trial drug given via applesauce comparatively to swallowing the drug. The hope is that the results will show that it is the same efficacy and that we can seek FDA approval for the drug to be administered this way. This could be a game changer for younger children. Imagine??? It seriously is the gas in my tank! Nothing motivates me more than this! There are many arms to CKc, but this is by far the most important!

 

August 12, 2015 -- Cannonball Kids' cancer Awards $100,000 Research Grant for "First-In-Children" Immunotherapy Clinical Trial

ORLANDO, Fla., August 12, 2015 – Cannonball Kids’ cancer (CKc), a non-profit organization dedicated to eradicating pediatric cancer, today presented its first research grant for $100,000 to Dr. Theodore Johnson, M.D., Ph.D., and his team at Georgia Regents University (GRU) Cancer Center in Augusta, Ga., to help fund a first-in-children, phase one pediatric brain cancer immunotherapy clinical trial which has the potential to impact how brain and other childhood cancers are treated in the near future.

“This isn’t just funding research, this is funding a future for our kids. If we don’t fight for them, no one will. Cannonball Kids’ cancer may only be one year old, but we believe we are David and we plan to take down Goliath!” said CKc co-founder, Melissa Wiggins.

Children with relapsed or progressive brain tumors currently have a dismal prognosis and few treatment options. Through Dr. Johnson’s new trial, these children will have new immunotherapy treatment options, which also have the potential to change the paradigm of how pediatric cancer is treated. The immune system is naturally able to identify and destroy cancer cells. In order for cancer to grow, it must evade or disable the immune system. The body has checkpoint pathways, including one called IDO (indoleamine 2, 3dioxygenase). Tumors, or cancer cells, use the IDO enzyme in the body to escape the body’s natural ability to kill the cancer. Dr. Johnson and the team at GRU Cancer Center have developed a drug, indoximod, which blocks the IDO, allowing the immune system to do its job – fight cancer cells. Immunotherapy is currently being used to treat some types of pediatric cancers; however it is only now being used to treat pediatric brain cancers. 

“Brain tumors are the most common solid tumors in children with more than 3,500 new cases each year. More children die each year from brain tumors, nearly 2,700 per year, than any other cancer,” said Dr. Johnson. “Immunotherapy treats cancer by enlisting the body’s own immune system to specifically seek out cancer cells and eliminate them, ideally leaving normal tissue undamaged. Immunotherapy is more natural and potentially less toxic than ‘high-dose’ chemotherapy, and it is likely to work better in children because their underlying immune systems are stronger than adult immune systems. Funding from organizations like Cannonball Kids’ cancer is critical to advancing innovative immunotherapy research in children.”
 “We are incredibly pleased and proud to be able to partner with Cannonball Kids’ cancer,” said Dr. Samir Khleif, Director of the GRU Cancer Center. “Dr. Johnson's research is a reflection of the level of excellent discovery occurring at the GRU Cancer Center, allowing us to help our patients with the latest innovations of new therapies for adults and pediatrics. More than merely a validation of the kind of innovative research and patient care we consider so important to our youngest patients, this partnership represents continued growth within our Cancer Center family something we see as foundational for our continued success."

In early 2015, the CKc board of directors met with several CEOs of established nonprofit organizations dedicated to childhood cancer to best determine where its research grant would have maximum impact. Dr. Johnson’s research study stood out to the CKc board after their meeting with Jay and Liz Scott, co-executive directors of Alex’s Lemonade Stand. 

“Dr. Johnson’s clinical trial was especially striking to us. We knew this was our guy. Dr. Johnson is going to make a footprint in pediatric immunotherapy and we are going to help him help kids around world,” said CKc co-founder, Michael Wiggins. 

Funds were raised through a variety of grass-roots efforts including community-wide events, school fundraisers, CKc Card Club events, golf tournaments, online and personal donations, ballroom dancing events, and proceeds from the sale of the book, “Thankful For The Fight”, written by the Wiggins family about their journey to save Cannon’s life. Events and fundraisers have been held both domestically and internationally, reaching as far as Hong Kong.  

“Our hearts are so grateful for each and every dollar and every person who donated funds to join our fight against childhood cancer. Every one, ten, hundred or thousand dollar donation was critical to us successfully reaching our goal of raising $100,000 in our first year. When the donations are added up, the total impact we have is incredible,” said Melissa Wiggins.

“Our team is devoted and dedicated to finding a cure for childhood cancer. Go big or go home is our motto. This is just the beginning,” stated CKc chief executive officer, Ashley VanDerMark.

Based in College Park, Fla., Cannonball Kids' cancer was founded in June 2014 by Michael and Melissa Wiggins, parents of Cannon Wiggins. When Cannon was 20 months old, he was diagnosed with Stage IV high-risk neuroblastoma. During the treatment of Cannon, Michael and Melissa learned so 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.  

 [The “c” in cancer in the name Cannonball Kids’ cancer is intentionally lowercase to give the word cancer an inferior status.]