Hometown Heroes: Championing a Cure for DIPG

Dr. Mark Souweidane is a hero to many, saving young lives daily as a pediatric neurosurgeon.  But what puts him a cut above even that level of heroism is his chosen specialty: Seeking a cure for DIPG (diffuse intrinsic pontine glioma), a rare form of brain cancer that is nearly always fatal, killing about 200 kids a year in the U.S.

“Watching these children die of a relatively small tumor” is heartrending, Souweidane told the Daily News, especially the parents’ suffering. “I watch it, and I watch their grief, and I listen to their pleas of desperation, and I watch those kids take their last breaths. And it tears at you.”

“He’s an amazing human being,” former nightclub owner and promoter John “Gungie” Rivera, who nominated Souweidane as a Hometown Hero, told The News. “He’s an amazing person. He’s very caring and kind and compassionate, and I really believe that what he’s doing is eventually going to lead to a cure one day.”

The two met when Souweidane treated Rivera’s son Cristian for DIPG. The fast-growing tumor forms inside the pons region of the brain stem, which controls breathing, blood pressure, heart rate, swallowing, balance and other vital functions. Most diagnoses are in children ages 5 to 9, though any stage of childhood is fair game for the aggressive cancer.

Cancers of the brain and spinal cord are the second most common in children after leukemia, according to the American Cancer Society, accounting for one in four childhood tumors. More than 4,000 children and teens receive such a diagnosis each year in the U.S. DIPG is particularly untreatable because it infiltrates nearby tissues, so it’s inoperable. Traditional chemotherapy cannot reach it.

“It’s the tumor from hell,” Rivera said. He should know. He lost Cristian 13 years ago this month, at age 6. Soon after, Rivera started the Cristian Rivera Foundation, which funds research into a cure for DIPG, supports families undergoing treatment and spreads awareness about the disease.

Cristian Rivera Foundation that battles deadly childhood cancer DIPG marks 10th annual event with a success story, Souweidane is studying ways to bypass the blood-brain barrier by threading hair-thin hollow fibers straight into the affected tissue to deliver the medicine. The technique is known as convection-enhanced delivery (CED), and while still in clinical trials, it has extended lives. But since it involves so few people, research money is hard to come by.

“That’s one of the challenges for us … the relative investment of your dollar is much better spent on what benefits most people,” said Souweidane. “It’s understandable, but it’s frustrating.” But that is exactly what compels him to seek a cure. The doctor is convinced that if this disease got the same funding firepower that other cancers — such as breast or lung — received, it could be cured in a matter of years.

“There’s almost a sense of, this thing has been kind of abandoned,” he said of research and funding for DIPG. “It’s just been left by the wayside.” The Cristian Rivera Foundation has given Souweidane about $1.5 million for his research and clinical trials. And it’s extending lives.

“We have a handful of kids who have gone well beyond expected duration of survival,” Souweidane said, when normally “it’s universally fatal after about a year, sometimes two years. After promising results from a years long Stage 1 trial, Souweidane is preparing to launch a wider Phase 2 clinical trial.

“I really believe this disease is within our gunsights on a global scale,” the determined doctor said. “I have a continued degree of optimism and expectation that it’s going to happen, it’s just a matter of when and how…. Failure is not in my playbook.”


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