Research Projects Funded by OCF
Here are some of the research projects funded completely or in part by Olivia Caldwell Foundation. To date, we have donated a little over $1 million to pediatric cancer research with a specific interest in the treatment of low-grade gliomas and other pediatric brain cancers. We have provided full funding for 12 research projects and been a partial funder of 30 additional research projects.
We've also helped our Research Team secure an additional $4.5 Million in additional Federal Funding to further the research projects we've supported.
We've also helped our Research Team secure an additional $4.5 Million in additional Federal Funding to further the research projects we've supported.
“Our goal is that these patients live long and happy lives.” - Dr. Dorris
Research Breakthroughs Made Possible With OCF Funding
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#2 - The development of therapy to overcome resistance to targeted therapy
(read more) #4 - Exploration of all the cells in a low grade glioma using single cell deep sequencing techniques (ongoing)
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Research Breakthrough Family Story
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Shaun’s Quest to Send His
Brain Tumor to a Black Hole Exploring New Frontiers in Cancer Treatment through Clinical Trials Shaun cannot remember his life before cancer. He also cannot remember a time when he wasn’t infatuated with space exploration. In many ways, these two things are inextricably intertwined for him. Now 13 years old, Shaun was just 2 when doctors at the Children’s Hospital Colorado Center for Cancer and Blood Disorders (CCBD) explained to his parents, Sonya and John, that he had a cancerous brain tumor the size of a pool ball in the left side of his brain. The diagnosis of pediatric low-grade glioma (pLGG) explained the symptoms he had been exhibiting for months: excessive drooling, losing the ability to speak, an increasingly difficult time balancing and moving, favoring the left side of his body, and eventually stopping the use of his right side altogether. Just as Shaun’s family received this terrible news and he began treatment, the toddler watched “Mickey Mouse Goes to Space” for the first time. And that was it. Shaun’s curiosity was sparked, and his passion for space began. Determined to become an astronaut one day, Shaun wore a spacesuit to each doctor’s appointment in the years that followed. Even Shaun’s tumor type – an astrocytoma - takes its name from |
the stars, referencing the shape of the cells from which his cancer grows. Today, Shaun is committed to learning everything he can about space as a final frontier – much like our dedicated Children’s Colorado oncology researchers, who conduct clinical trials and explore every aspect of the body in their quest for answers, treatments and cures for pediatric cancer.
A Diagnosis with Few Treatment Options
Every child’s journey with pLGG is different, based on the location of the tumor in their brain. For some, delicate brain surgery can remove all or most of the cancer. But for many others – like Shaun – the tumor’s location makes it nearly impossible to remove fully through an operation. For these kids, chemotherapy is the only next option. Shaun was first treated with chemotherapy for 12 months, which initially shrank his tumor. After several months, though, as is often the case with pLGG, the cancer started to grow again.
For recurring gliomas, there are few good treatment options. And potent chemotherapies frequently wreak havoc on kids’ growing bodies. At 4 years old, Shaun developed terrible mouth sores with one therapy and needed to take medications with significant side effects to help manage his excruciating pain.
As Shaun’s family searched for a new therapy with fewer side effects, doctors discovered through genomic testing that Shaun’s tumor had a genetic change that made him a candidate for a new chemotherapy treatment for which Children’s Colorado was just opening a clinical trial. At the time, a drug called binimetinib (MEK 162) was FDA-approved to stop the growth of certain kinds of adult cancer and showed promise for shrinking some pediatric tumors. The clinical trial was designed to determine the right dose and side effects of MEK 162 for kids, along with its effectiveness in children with pLGG.
Shaun stayed on this medication for two years, which helped keep his tumor from growing during that time. A few years later, though, the tumor started growing again.
“Low grade gliomas are the most common brain tumor that we see in pediatrics,” said Kathleen Dorris, MD, an oncologist with our CCBD’s Neuro-Oncology Program and Experimental Therapeutics Program, who has been Shaun’s doctor from the beginning. “These gliomas often go dormant after treatment and then ‘wake up’ again. Shaun’s tumor had a genetic change that made us think it would be potentially sensitive to this new orally targeted chemotherapy medicine.”
By participating in this clinical trial, Shaun helped doctors determine the correct dose of MEK 162 for children, better understand its side effects and discover that it can be effective against pLGG. Shaun is now enrolled in another research study with a different form of chemotherapy. In the decade since he was diagnosed with cancer, he has tried five different chemotherapy plans off and on – and has been a part of two research studies. Because most gliomas go into remission when patients reach young adulthood, oncologists aim to control tumor growth and limit its impact on children’s long-term quality of life.
“Our goal is that these patients live long and happy lives,” said Dr. Dorris. “For Shaun, if we didn’t have these new therapies, he very likely could have lost the mobility of his right side altogether and been unable to run and play sports, which give him so much joy. But it is imperative that we find better therapies that don’t have long-term toxicities; patients often undergo years of treatment currently, and we do not want them to develop new problems down the road.”
Every child’s journey with pLGG is different, based on the location of the tumor in their brain. For some, delicate brain surgery can remove all or most of the cancer. But for many others – like Shaun – the tumor’s location makes it nearly impossible to remove fully through an operation. For these kids, chemotherapy is the only next option. Shaun was first treated with chemotherapy for 12 months, which initially shrank his tumor. After several months, though, as is often the case with pLGG, the cancer started to grow again.
For recurring gliomas, there are few good treatment options. And potent chemotherapies frequently wreak havoc on kids’ growing bodies. At 4 years old, Shaun developed terrible mouth sores with one therapy and needed to take medications with significant side effects to help manage his excruciating pain.
As Shaun’s family searched for a new therapy with fewer side effects, doctors discovered through genomic testing that Shaun’s tumor had a genetic change that made him a candidate for a new chemotherapy treatment for which Children’s Colorado was just opening a clinical trial. At the time, a drug called binimetinib (MEK 162) was FDA-approved to stop the growth of certain kinds of adult cancer and showed promise for shrinking some pediatric tumors. The clinical trial was designed to determine the right dose and side effects of MEK 162 for kids, along with its effectiveness in children with pLGG.
Shaun stayed on this medication for two years, which helped keep his tumor from growing during that time. A few years later, though, the tumor started growing again.
“Low grade gliomas are the most common brain tumor that we see in pediatrics,” said Kathleen Dorris, MD, an oncologist with our CCBD’s Neuro-Oncology Program and Experimental Therapeutics Program, who has been Shaun’s doctor from the beginning. “These gliomas often go dormant after treatment and then ‘wake up’ again. Shaun’s tumor had a genetic change that made us think it would be potentially sensitive to this new orally targeted chemotherapy medicine.”
By participating in this clinical trial, Shaun helped doctors determine the correct dose of MEK 162 for children, better understand its side effects and discover that it can be effective against pLGG. Shaun is now enrolled in another research study with a different form of chemotherapy. In the decade since he was diagnosed with cancer, he has tried five different chemotherapy plans off and on – and has been a part of two research studies. Because most gliomas go into remission when patients reach young adulthood, oncologists aim to control tumor growth and limit its impact on children’s long-term quality of life.
“Our goal is that these patients live long and happy lives,” said Dr. Dorris. “For Shaun, if we didn’t have these new therapies, he very likely could have lost the mobility of his right side altogether and been unable to run and play sports, which give him so much joy. But it is imperative that we find better therapies that don’t have long-term toxicities; patients often undergo years of treatment currently, and we do not want them to develop new problems down the road.”
Philanthropic Support Critical to Funding Clinical Trials
Children’s Colorado would not be able to conduct life-changing and lifesaving research without the financial support of generous donors. National Institutes of Health (NIH) funding rarely covers the full cost of research, including the infrastructure necessary to support clinical trials. Between budget cuts and inflation, the NIH has far less spending power today than it did 20 years ago. These challenges are compounded by insufficient funding. Only 4% of federal dollars spent on cancer research are directed to childhood cancer. As anyone who has fought pediatric cancer can attest, this research is too important to be delayed by inconsistent funding.
“When someone gets sick, you expect to have a treatment,” said Sonya. “When your child gets sick, and you don’t have options, you’re ready to walk across coals, to do just about anything to help them. But you can’t do any of that. The only hope for your child is a scientist in a lab – and a researcher at the bedside. And that must be paid for.”
For Shaun and the thousands of other kids diagnosed with cancer each year, these innovations cannot wait.
Like black holes - Shaun’s favorite objects in space, which he said he loves because they are the most confusing phenomena - cancer is also terribly perplexing. Shaun’s tumor is constantly evolving and outsmarting the therapies that doctors administer. But thanks to the clinical trials taking place at Children’s Colorado and across the country, progress is being made to find new treatment options and perhaps eventually a cure for gliomas and other brain tumors. Join us by giving today to make an astronomical difference in the lives of children like Shaun.
Children’s Colorado would not be able to conduct life-changing and lifesaving research without the financial support of generous donors. National Institutes of Health (NIH) funding rarely covers the full cost of research, including the infrastructure necessary to support clinical trials. Between budget cuts and inflation, the NIH has far less spending power today than it did 20 years ago. These challenges are compounded by insufficient funding. Only 4% of federal dollars spent on cancer research are directed to childhood cancer. As anyone who has fought pediatric cancer can attest, this research is too important to be delayed by inconsistent funding.
“When someone gets sick, you expect to have a treatment,” said Sonya. “When your child gets sick, and you don’t have options, you’re ready to walk across coals, to do just about anything to help them. But you can’t do any of that. The only hope for your child is a scientist in a lab – and a researcher at the bedside. And that must be paid for.”
For Shaun and the thousands of other kids diagnosed with cancer each year, these innovations cannot wait.
Like black holes - Shaun’s favorite objects in space, which he said he loves because they are the most confusing phenomena - cancer is also terribly perplexing. Shaun’s tumor is constantly evolving and outsmarting the therapies that doctors administer. But thanks to the clinical trials taking place at Children’s Colorado and across the country, progress is being made to find new treatment options and perhaps eventually a cure for gliomas and other brain tumors. Join us by giving today to make an astronomical difference in the lives of children like Shaun.
