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.]