Every day, worried parents arrive at Seattle Children’s looking for answers to puzzling medical questions. Some of the more perplexing of these relate to the mitochondria — microscopic structures inside our cells that make most of the energy we need to live. Mitochondrial disease is a chronic, progressive, genetic disorder that occurs when these cell “powerhouses” cannot create enough energy for a cell or organ to work properly. Each year, Seattle Children’s treats __ children with mitochondrial disease, with symptoms ranging from mild weakness to severe cognitive and physical disabilities. Thanks to the determination of one guild, the hospital is a leader in mitochondrial disease research and treatment. The Mitochondrial Research Guild, formed by a group of “mito parents,” helped fund and advocate for the recruitment of a “dream team” of mitochondrial experts at Seattle Children’s.

“Our guild’s success relies on partnerships with hospital and research leadership and the Guild Association,” says Jill Herczog, mito parent and guild founder. “We are like the glue that helps keep things together, but this wouldn’t happen without our partners and the passion of individuals focused on mitochondrial disease.” The guild’s latest efforts resulted in the availability of a game-changing test at Seattle Children’s, previously only available at one other center in the country: mitochondrial enzyme testing.

Essential Guild Partners An alliance between two guilds made the test a reality. Herczog and her team had been working to bring enzyme testing to Seattle Children’s for over a decade, and finally initiated its development three years ago. As funding dwindled to support Dr. Bernhard Kayser, the scientist designing the test, Herczog reached out to Monica Wellner, president of the Focus on Kids’ Laboratory Guild. The guilds had collaborated before, with members even volunteering at each other’s fundraisers. When Wellner heard about the $40,000 match needed to bring the test over the finish line, her guild stepped up. “In the middle of a pandemic, during a hiring freeze, we couldn’t afford to lose this expert,” says Wellner, director of Seattle Children’s Laboratories. “It’s great we have our own guild funds so we can go above and beyond as needed to support this kind of innovation for patient families.” Wellner also noted that Dr. Kayser’s work will be key to understanding diseases beyond mito. Focus on Kids’ Laboratory Guild member and co-director of Seattle Children’s biochemical genetics laboratory Dr. Anna Scott says the first test was completed in March. She hopes this will provide a muchneeded sense of closure for families affected by mitochondrial disease. “Not only do we have great care at Seattle Children’s hospital with Dr. Saneto, but we have the research team, which works closely with the hospital allowing families to be involved in both their child’s care and the most current research,” Serex says. “They are starting to break ground on some phenomenal things. We’re really blessed to have all these experts in our own backyard at Seattle Children’s.”