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Gregory’s Story: How an Infant Helped Advance A Breakthrough Treatment For Infant Leukemia

Patients Speak Biotech

When little Gregory was born on May 11, 2016, he immediately became the apple of his parents’ eyes. He was a happy baby, always with a smile for his family and favorite people. His affectionate soul and grace-filled eyes conquered people’s hearts wherever he went.

At 10 months, little Gregory’s world turned upside down. “He was not quite right at about ten months,” his parents say. “He slept long hours and did not eat his food. He was fussy and losing weight.”

Initially, when his parents took him to a doctor for a checkup, they were told little Gregory had ear infections. But after treatment, the problems did not go away.  A blood check later discovered he was suffering from a rare and deadly form of Acute Lymphoblastic Leukemia (ALL).

“Traditional treatments did not do a thing,” Gregory’s parents say. Like most infantile cancers, Gregory’s was aggressive and traditional chemotherapy failed to put him in remission.

Here is where Gregory’s story became the fight that was bigger than his own life. Little Gregory helped turn the course of a breakthrough treatment that was destined for adult blood cancers into an option for infants with leukemia.

It starts with Gregory’s parents who proved relentless in Gregory’s fight. When traditional treatment options (i.e. chemotherapy) for infant leukemia had been exhausted, Gregory’s parents were successful in enrolling him into a clinical trial at the Children’s Hospital of Pennsylvania (CHOP) for an experimental treatment called, CAR-T19.  “CAR-T” is a class of immunotherapies that work by enlisting the patient’s own immune cells to treat their cancer. The first CAR-T therapies were approved by the FDA in fall of 2017 for adult blood cancers, and results for some patients have been reportedly remarkable. However, breakthroughs that address adult cancers do not often become options for children, let alone infants. This is because the development of treatments for children and infant diseases often lack financial incentives for pharmaceutical developers due to small market sizes and difficulty in recruiting enough patients for clinical trials.

For Gregory, the positive effects of CAR-T19 were immediate, but it did not last long.   Gregory went into remission for three weeks until his cancer returned. Gregory’s options were limited at this point, but this did not stop his parents from fighting harder.   Gregory’s mother and father took on the FDA, the pharma industry and the clinicians to advocate for an alternative CAR-T option, called UCAR-T that had never been used in the pediatric population. “We advocated for Gregory before the FDA, before pharma and before his clinicians. We pushed them to look at opportunities for therapies and did not give up.”

Alas, Gregory was granted “compassionate use” of UCAR-T, making him the first infant to test this breakthrough treatment. Again, UCAR-T had an immediately positive effect, but only for a few days. The cancer came back. No further treatments were available to save Gregory from his aggressive cancer, and he passed away on March 21, 2018, at just 21 months of age. Clearly something positive had happened with UCAR-T, only it wasn’t enough in Gregory’s case.

In spite of their heartache, Gregory’s parents continued his fight. The Gregory Foundation for Cancer Research was immediately launched to help speed up research of innovative treatments for infant cancer. Today, the Gregory Foundation is partnering with nonprofit organizations and academic institutions to help develop therapies to patients globally.

The Gregory Foundation will be holding its first fundraising Gala on September 20, 2018, and will co-host the Biden Cancer Summit in partnership with Northwell Hospitals on September 21, 2018. For more information or to make a donation to the Gregory Foundation, please visit: www.gregoryfoundation.org

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