PECE, Love and Tequila

Lew Parker could be doing fine at school or on a lazy Sunday at home. Then, suddenly, time stops and a seizure hits. 

“With epilepsy, you are always on high alert,” says Jen Parker, Lew’s mother. “You can’t count on things being good from one hour to the next.”

Jen and Vic Parker shared their family’s struggle, and their son’s dramatic improvement under the care of Joseph Sullivan, MD, director of UCSF’s Pediatric Center of Excellence (PECE), during a fundraiser at their Hillsborough home on September 30.

“Our house is a happy house, even though we live with something heavy—and Lew is a big part of that happiness. So much of that we owe to Dr. Sullivan and PECE.” Jen, Lew’s mother

More than 300 guests were in attendance, including patient families and community members, raising over $280,000 to support the family-centered model of care that PECE is pioneering. Guests enjoyed live music and a tequila tasting led by Bertha González Nieves, co-founder and CEO of Casa Dragones.

The UCSF team also shared a major research breakthrough. A new formulation of a drug that was used to treat children with a rare neurological condition in the 1980s may offer promise for patients with a severe seizure disorder.

This study was based on a surprising research model: genetically engineering zebrafish. Sullivan partnered with Scott Baraban, PhD, to use the gene-editing technology CRISPR to impose the exact genetic glitch that causes the disorder in the fish. The clinical trial’s success indicates that this model could be a key to further discoveries.

“Taking trials out of the lives of kids like Lew and letting fish handle it is amazing,” Parker says. “It’s reassuring to be at place where that kind of thinking is going on.”

Under Dr. Sullivan’s care, 7-year-old Lew has gone from having as many as 15 seizures a day and being barely verbal to enjoying seizure-free stretches of two weeks and “going through an explosive discovery of the world,” learning new words each day.

PECE is also unique in offering comprehensive support for a patient’s parents and siblings.

“Epilepsy is hard on every facet of family life,” Parker says. “The goal is of course to seek cures and control seizures, but there’s also a lot of living to be done in between. Our house is a happy house, even though we live with something heavy—and Lew is a big part of that happiness. So much of that we owe to Dr. Sullivan and PECE.”