Guilds Bridge Gaps in Research Funding

Research Institute Celebrates 10 Years of Progress

Fall 2016 Feature Story Triptych

“Guilds are valued partners and have supported us every step of the way as we search for better treatments and new cures for pediatric diseases.”

– Dr. Jim Hendricks, president, Seattle Children’s Research Institute

Research fundraising has wide-ranging impact

Surgeries and other medical procedures have been, unfortunately, a regular part of life for Alexandra Serex. Diagnosed with mitochondrial disease when she was 18 months old, Alexandra has undergone anesthesia 10 times in her eight years. Children with mitochondrial disorders are dangerously sensitive to anesthetics, but thanks to protocols developed by Dr. Phil Morgan, pediatric anesthesiologist and mitochondrial disease researcher at Seattle Children’s Research Institute, these kids now suffer fewer side effects.

Ten years ago, Seattle Children’s formalized its research program, which had been an integral part of the hospital’s mission for decades, with the opening of the institute’s new lab building in downtown Seattle. Jill Herczog, a “mito parent” and co-founder of one of the first research-focused guilds, says that the state-of-the-art facility was a major turning point for her guild, in that it enabled members to recruit some of the country’s top specialists, including Morgan and Dr. Margaret Sedensky.

A strong partnership

“Our partnership with the institute has helped the Mitochondrial Research Guild’s funds go much further,” says Herczog. “We’ve raised $3 million in 13 years, and while on one hand that’s a lot of money, in research terms it’s a drop in the bucket. Working with the institute, we use it to recruit talent and as essential seed money for studies that produce data scientists can use to leverage larger funding sources.”

Ten years ago, three Seattle Children’s guilds were pioneers in research-focused giving. Today, 34 guilds support institute researchers’ studies of 16 pediatric diseases and medical conditions. These studies depend on guild monies; the National Institutes of Health and other funding organizations often won’t back pilot research without initial data to support further study. Guild support is critical to bridging these funding gaps, to propel work toward better treatments and cures for children.

Funding a search for answers

The SIDS Research Guild has raised more than $200,000 toward fulfilling its mission to solve the mysteries of sudden infant death syndrome (SIDS). The guild was formed two years ago by Dr. Daniel Rubens, an anesthesiologist and Seattle Children’s Research Institute SIDS specialist who announced, in April, a new study that focuses on hearing and associated factors to detect infants at risk well before a potentially fatal event occurs.

“It’s been 16 years since our daughter passed,” says Saori Takayoshi, guild co-president. “We looked for months and at that time could not find any SIDS research to donate to. I would like to stop families from having to grieve this.”

Also inspired by personal experience is Shireen Singh, whose son, Suhail, had a debilitating but curable brain cyst when he was 10. She helped Suhail, now 18, launch the Kare4Kids Guild in 2012, because he wanted to give back to Seattle Children’s. The youth-run guild has since raised more than $55,000 for neurological research into pediatric stroke, epilepsy and autism spectrum disorders.

“Guilds are valued partners and have supported us every step of the way as we search for better treatments and new cures for pediatric diseases,” says Dr. Jim Hendricks, president of the institute. “In celebrating Seattle Children’s Research Institute’s 10th anniversary, we raise a toast to the guild members whose commitments have helped advance science to improve children’s lives. Because of you, we’re making tremendous strides.”

Click here to learn how your guild can support the research institute.