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October 2006
Feature Story
DCRI lab wins private funding from Kentucky foundation
The Malia C.O.R.D. Foundation has selected Dr. Bernard Maria's lab in the Darby Children's Research Institute (DCRI) to receive a $160,000, one-year renewable grant to study spinal cord tumors.
A private foundation based in northern Kentucky, the Malia C.O.R.D. Foundation was established by Dan and Kara Heck to help find a cure for their daughter Malia, who was born with a spinal cord tumor. The foundation also awarded a grant to Dr. George Jallo of Johns Hopkins Hospital in Baltimore, where he is also working to develop a cure for spinal cord tumors.
Malia's C.O.R.D. Foundation represents a whole universe of similar foundations that support research in the DCRI, says executive director Dr. Maria, a pediatric neuro-oncologist.
As the slashed NIH budget continues to make federal grants more difficult to secure than ever, researchers find they must look beyond traditional resources to find funding for their work. Increasingly, they're finding support through private foundations like this one.
"More and more foundations, established primarily by people challenged by a variety of conditions, are supporting research for a particular, specific condition," explains Dr. Maria, who oversees researchers in the developmental neuro-oncology lab where the tumor work is underway. "It makes for a very special relationship."
It's a relationship the Hecks were anxious to foster.
When Malia was diagnosed four years ago with a rare and incurable intramedullary spinal cord glioma, her parents were devastated by the options.
Radiation, typically the prescribed therapy for young patients, is often damaging to still-developing nervous systems. Now six, Malia is in remission, and her parents are "cautiously optimistic," says mom Kara.
"Our only hope is that medical researchers quickly develop a safer and more effective alternative to radiation," she says.
Spinal cord tumors like Malia's are so rare and non-immediate, though --the average life expectancy is seven years after diagnosis-- that research is almost non-existent.
"Most of the funding goes into brain tumor research, with hopes that the results will cross over," explains Kara. "But the more we learn about spinal cord tumors, the more we realize we can't make that assumption. A tumor functions differently in the brain than it does in the spine."
To speed up the search for a cure, the Hecks created the nonprofit, charitable Malia's C.O.R.D. (Cure for Others through Research and Development) Foundation.
The foundation quickly found a research outlet in Dr. Jallo, assistant professor of Neurosurgery Pediatrics and Oncology at Johns Hopkins, who is currently working to develop a treatment to cure intramedullary spinal cord tumors. Clinical trials are expected to begin later this year.
The Hecks then made it known that the foundation was looking for other research projects to support, and were connected with Dr. Maria through NIH.
"Dr. Maria's research is very specific and a needed avenue," says Kara. "He and his researchers are developing a genetic animal model that more accurately reflects how my daughter and others like her are born with these kinds of tumors, as opposed to being implanted with them."
This should allow the animal model to respond more similarly to a human. "It will give us a better idea of how chemotherapy, radiation and neurosurgical treatment will work, and of the outcome when Dr. Maria goes to clinical trial," says Kara.
She is particularly hopeful about Dr. Maria's work on HA inhibitors and reducing the inflammation (see article below) that surrounds the tumor, and how it causes recurrence.
"This is a key difficulty with spinal cord tumors," says Kara, "since our daughter and so many others have experienced recurrence."
The Hecks are enthusiastic about supporting this research and confident about collaboration between Dr. Maria and Dr. Jallo.
"Hopefully they can join efforts," says Kara. The parents were discouraged to learn, during their search for projects to fund, that researchers across the country were not always aware of similar ongoing work.
"We don't want duplication," says Kara. "When we talk to new researchers, we want them to know what others are doing - so they can come up with a complimentary or different investigation and solution."
It's a point well-heeded, as private foundations step in to fund research projects with one end in mind:
"Our goal is that this research will benefit Malia in her lifetime, as well as others who suffer from this illness," states Kara.
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