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Mailing Address:
Focus on Kids Laboratory Guild
​PO BOX 5371, M/S: FB.4.510
Seattle, WA 98145
Genome Now! Initiative
The Focus on Kids Laboratory Guild supports the new Seattle Children’s Genome Now! Initiative, which has the potential to fundamentally improve genetic testing in children. The Department of Laboratories has teamed up with the Medical Genetics Clinic to evaluate a new technology at the forefront of genomic testing that allows for comprehensive, rapid and cost-effective identification of disease-causing genetic changes. In preliminary studies, it has already found genetic changes that were not identified using traditional testing methods and has ended the diagnostic odyssey for some families. In 2021, The Focus on Kids Laboratory Guild raised more than $28,000 to support Genome Now!
Guild Delivers Transformational Test for Mito Patient Families
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.”
A Crossroads for Collaboration
The Focus on Kids’ Laboratory Guild has two goals: to increase awareness about the diverse impact of Seattle Children’s Laboratory on patient families and to raise funds for innovative lab projects. Because nearly every patient at Seattle Children’s is touched by the lab, the guild is in the unique position to advance the causes of other guilds:
• Guild leaders welcomed members of A Brighter Future Guild to sell hand-carved Harry Potter wands at their annual fundraiser (pictured left). After learning that the son of the guild’s founder was on ECMO as a baby, the Focus on Kids’ Laboratories Guild members invested funds to support Dr. Wayne Chandler’s ECMO research.
• Guild leaders invited Dr. Klane White, Seattle Children’s director of skeletal health and dysplasia, and co-founder of Susannah White’s Three Feet of Sunshine Guild, to speak at a fundraiser. Dr. White is internationally recognized for the orthopedic care of children with Hurler Syndrome (MPS I), a rare and progressive genetic disease. This work is inspired, in part, by his daughter, Susannah, who died of complications related to Hurler Syndrome at age 9. The guild invested funds from the event to support a scientist to advance Seattle Children’s role in Washington’s newborn screening program, one of the first states in the country to provide MPS I testing for every newborn.
Innovation at Seattle Children's Department of Laboratories
Seattle Children’s Laboratory developed a method for patients to collect their own blood sample at home.
This at-home collection is very beneficial for many of our transplant patients who need to have blood drawn frequently to monitor their transplant-drug levels. Now, patients and families don’t have to drive to the hospital every week!
It allows our patients and families to stay safe at home and continue to get their required lab testing.
In fact, our Chemistry team developed additional testing that can be performed from blood-spots. This is just one example of innovation that supports our patients!!
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Watch, Seattle Children's patient, Zoe, show us how patients can collect their own lab sample for testing at Seattle Children’s