Docs: Cure just years away for tumor that killed Chad Carr
Saline — Young Chad Carr always is near.
His cherubic face graces blankets spread across the family room sofa.
He’s in the sound of the wind chimes in the tree near the driveway.
And he’s in his mom’s tears at the mention of his name.
“I think one of the things I miss most is the orange sunrise,” said Tammi Carr, tears spilling before wiping them away on a recent afternoon in the family room. “When he was pretty sick, he wanted me to watch the sunrise with him.”
She pauses and looks off into the distance.
"I think about him all the time," she finally says. "We talk about him a lot and watch family videos of him."
Tammi Carr, 43, still attends grief counseling sessions twice a week, four years after her son’s death. Her husband, Jason Carr, 45, a former University of Michigan quarterback, also continues to attend therapy.
Chad Carr, who inspired the Chad Tough Foundation, was 5 years old when he died Nov. 23, 2015. He lived 14 months after being diagnosed with an inoperable, malignant brain tumor: diffuse intrinsic pontine glioma. It is a cancerous tumor located within the brain stem, which overwhelmingly targets children, and there are zero long-term survivors. Doctors call it a death sentence.
The slow progress in finding a cure angers and frustrates Jason Carr, who sat near his wife while their sons — Tommy, 11, and C.J., 13 — tossed a football in the family's backyard.
“(Astronaut) Neil Armstrong’s daughter died of DIPG almost 60 years ago, and it still is a death sentence today,” he said.
But a cure could be as close as between three and five years away, doctors say.
A team of scientists at the University of Michigan School of Medicine is diligently working to reverse that prognosis. They will receive a $429,000 grant from the National Institute of Neurological Disorders and Stroke, a department within the National Institutes of Health, on April 1 to implement an innovative gene therapy on mice in an attempt to find a cure. The therapy stimulates a patient’s own immune system to kill brain tumor cells.
It is historic, according to Dr. Maria G. Castro, who, with her husband and partner, Dr. Pedro Lowenstein, lead a research team at the university.
“It is the first time ever that a gene therapy to develop an immune response against DIPG will be tested,” said Castro, a professor of neurosurgery and director of the Cancer Biology Training Grant at the University of Michigan Medical School. “We patented the therapy, and it has never ever been tested anywhere in the world.”
Castro describes the therapy as “very promising.”
“Gene therapy is pretty straightforward and has been used for years to treat other diseases, including AIDS,” she said. “What we’re doing is using a gene therapy strategy that harnesses the power of the body’s own immune response to attack and kill the DIPG cells.”
The procedure involves injecting mice with DIPG tumors.
“We injected the same genetic abnormalities that you find in human DIPG and put them in the mice brain stems,” Castro explained. “Genetic lesions or abnormalities then develop DIPG, and we now have a model we can treat.”
She adds, “If it works in mice, we will have the opportunity to treat children with DIPG.”
Children with DIPG are lucky to live one year from diagnosis. The average age of diagnosis is 6 years old, and roughly 400 children are diagnosed annually in the U.S. There is no known cause.
While there is an early clinical trial using a different gene with a similar strategy, NIH spokesman Christopher Thomas confirmed the uniqueness of the UM team's work with its targeted gene.
The trial is sponsored by Ziopharm Oncology, a Boston-based biotechnology company that's focused on acquiring developing, and commercializing a portfolio of immuno-oncology therapies.
“The strategy is generically called gene therapy, so it is possible that gene therapy is being used in another early phase clinical trial,” Castro said. “The type of gene therapy we are proposing is totally unique to our team.”
She said the analogy would be to “say that a team is using the general strategy of immunotherapy. There are many ways and many different drugs and vaccines that one could use.”
The NIH grant is bittersweet news for the Carr family. Tammi Carr is on the board of directors of the Chad Tough Foundation, and her husband is president of the part-time staff. Chad Carr also was the grandson of former University of Michigan head football coach Lloyd Carr and former University of Michigan football player Tom Curtis.
Chad was treated at the C.S. Mott Children's Hospital, a pediatric hospital through the University of Michigan Health System.
“I wish it would have happened earlier so it could have been a cure for our son,” Tammi Carr said. “We believe he had a job to do to inspire people like Maria and Pedro.”
The Carrs said the Chad Tough Foundation donations are up to $7 million. It is a nonprofit charitable organization officially founded in 2016, whose mission is to raise awareness and research dollars for pediatric brain tumors with an emphasis on DIPG. The foundation, along with the Happy Hearts Foundation, donated initial seed grants allowing Castro and Lowenstein to begin their research before receiving the NIH grant.
The Chad Tough Foundation donated about $50,000 to the Chad Carr Pediatric Brain Tumor Center at UM to research DIPG and other brain tumors, Tammi Carr said. That donation helped lead the team toward its current work.
“By having our foundation, we can make gifts to that institution, and to other institutions around the world when the best research projects come up,” she said.
Castro said she is grateful.
“The foundations gave us seed funding to help develop the mouse model,” she said. “We used these funds to develop the data prototype. It took two years to gather the data to go to the NIH.”
Castro said there are three steps that must be followed in their research.
“First, we must show it cures the disease — that it is efficacious,” she said. “Then we must show that it is safe, that it does not cause any adverse events. And then we must go to the FDA and submit a document seeking permission to implement the therapy in children.”
Dr. Karen Muraszko, chairwoman of the University of Michigan Department of Neurosurgery, said pediatric brain tumors are the leading cause of death in children from cancer.
“UM has a large program looking at pediatric brain cancer,” she said. “Much better progress has been made in cancers like leukemia. But there is a higher death rate with pediatric brain cancer because we don’t have the therapies, because, frankly, the funding isn’t there.”
She attributes the lack of funding to the relatively small number of children impacted and the fact the types of tumors are diverse.
“This is a tumor that deserves the attention of researchers and funding agencies, and though the number of children is small, that number is rising, and it doesn’t make sense for us to be nihilistic saying they’re not going to treat it at all," she said.
“For many years, this was just a death sentence. They should not relegate them to a death sentence. They should at least try.”
According to the Chad Tough Foundation, only 4 percent of all federally funded cancer research dollars are allocated to all pediatric cancers combined, of which DIPG receives zero.
As far as treatment, she said radiation slows it down but does not cure it. With chemotherapy, it has a hard time getting to the tumor because of the blood-brain barrier.
Another foundation, Leah’s Happy Hearts, also helped with seed money. It is a nonprofit and was created to preserve the memory of Leah Elizabeth James, who was also treated at C.S. Mott Children's Hospital. Like Chad Carr, she also died at the age of 5 from DIPG.
Her mom, Karen Cioma-James, 60, said since 2008, her foundation has donated about $142,500 to Castro and Lowenstein “and this is included in the over $200,000 we have donated to C.S. Mott Children’s Hospital’s various support programs.”
Leah lived 13 months after diagnosis. She died in 2005.
Cioma-James, who is originally from Livonia and now lives in Oxford, Florida, expressed joy about the UM grant to continue research on DIPG.
“As far as the doctors receiving the grant, it is exciting, and I can’t think of two better people who could find a cure for this deadly disease,” she said. “I believe that what they are working on won’t be as harmful to the body as other things being used, because from what I understand, it boosts your own immune system."
Tammi Carr, meanwhile, reflects on the role Chad played in possibly bringing about a cure in her lifetime.
“Chad had a job to do on this earth,” she said. “I believe it was to get people to care and get people working on a cure.
"Progress has been made in the past three years, and people now know about the disease and scientists know about it so that’s pretty powerful work he’s done.”