About the Mitochondrial Research Guild
The Mitochondrial Research Guild is a special interest guild of Seattle Children’s Hospital. The guild was founded in 2002 by a group of patient families working together to raise awareness, promote research, and improve the quality of care available to children and their families dealing with the devastating and potentially life-threatening effects of this disease.
Since our founding, we have raised over $5,000,000 to support mitochondrial disease care through the Program for Mitochondrial Medicine and Metabolism at Seattle Children’s Hospital. In 2018, the Mitochondrial Care Network recognized Seattle Children’s as a certified Mitochondrial Medicine Center. We are proud to contribute to the standard of excellence for mitochondrial disease care at Seattle Children’s Hospital, knowing that it directly impacts children and their families.
There is no cure for mitochondrial disease. Although it is one of the fastest growing disciplines in biomedicine, it is still classified as a rare disease, meaning many people never hear about it until somebody they know is diagnosed. We work to educate physicians and the general public on the lived experiences of children and families impacted by this disease, with the hope that they will come to Seattle Children’s to receive a proper diagnosis and world class care.
Research is critical to develop treatments and cures for rare diseases – but it is difficult to fund. We believe investing in high-quality research for mitochondrial disease will lead to improved treatments that will strengthen the quality of life for impacted children and their families. Our investments support an amazing team of researchers dedicating their lives to mitochondrial disease. We support their efforts through providing seed money for new research teams, purchasing equipment for their labs and funding post-doc fellowships through the Seattle Children’s Research Institute.
Improving Quality Care
Children living with mitochondrial disease often experience both medical and developmental challenges and require multi-disciplinary care, which, in the absence of a cure, is supportive and symptomatic. Advances in diagnosing mitochondrial disease, including through DNA sequencing, mean many families learn about their child’s illness very early in their lives. We invest in clinical staff to support coordinated care for children being treated at Seattle Children’s, as well as family grants to expand access to supportive symptom-management options for families in need.
As the guild heads into its twentieth year of existence, the long-term vision of the guild remains strong. We are very fortunate to have a dedicated team of mito specialists, a great medical institution, Seattle Children’s, and all of our sponsors and donors sharing our vision.
“A small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has”