Mom’s fundraising helps advance research into deadly brain tumor

Bereaved mother Mycah Clemons raised money for a summer scholarship at Stanford for research on diffuse intrinsic pontine glioma. The move sparked a series of experiments that have led to a possible treatment for the tumor.

Mycah Clemons (left) visits Michelle Monje's lab at Stanford.
Douglas Peck/Lucile Packard Foundation for Children's Health

Vibrant, kind-hearted and articulate little Maiyanna Clemons-McCarthy was 3 when she was diagnosed with diffuse intrinsic pontine glioma in Pittsburgh in May 2013. Her mom, Mycah Clemons, contacted Stanford’s Michelle Monje, MD, PhD, to ask if any treatments were available for children with the fatal tumor.

“When I called Dr. Monje looking for help, this apologetic and empathetic voice on the other end of the phone told me unfortunately there was nothing promising in terms of treatment she could offer,” Clemons said. It was devastating news for Clemons to receive about her only child.

A close friend of Clemons’ family launched Maiy’s Miracle Foundation to help the little girl have the best possible quality of life in her remaining time. When Maiy died on April 16, 2014, at age 4, Clemons donated her daughter’s brain tumor to Monje’s lab. She also continued to fundraise, donating money to Stanford that sparked experimental work that has uncovered the therapeutic potential of engineered immune cells for diffuse intrinsic pontine glioma.

Maiyanna
Clemons-McCarthy

“With the funding from Maiy’s Miracle Foundation, we awarded a summer research scholarship to a Stanford undergraduate student to screen human DIPG tumor cultures for surface molecules that could act as targets for CAR-T cells,” said Monje, assistant professor of neurology. “That started us down a path of discovery toward a new approach for eliminating DIPG.”

Several other donations — including one from Unravel Pediatric Cancer, a foundation launched by another bereaved family — also helped the research come to fruition. “The whole project had a ‘meant to be’ feel to it: Exactly what we needed to move forward kept being offered up as we needed it,” Monje said.

The research findings were published in Nature Medicine on April 16, the fourth anniversary of Maiy’s death.

“This is a prayer answered,” Clemons said. “It’s important for me to fundraise so the next family who calls Dr. Monje looking for help will get a voice of excitement and reassurance that she can offer something promising for their child and family.”



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