The Mitochondrial Research Guild is a special interest guild of Seattle Children’s Hospital. The guild was founded by a group of families in the Seattle area that are working together to raise awareness, promote research, and improve the quality of medical care that is available to children that are dealing with the devastating and potentially life threatening effects of this disease.
Over the last nine years the Mitochondrial Research Guild has raised over $1,800,000 from our annual “Cure for Mito” auction and other fund raising events. This money is being used to support the long-term vision that the guild has embarked on in conjunction with Dr. Russ Saneto, Dr. Sihoun Hahn, Dr. Phil Morgan and Dr. Marge Sedensky and their team of mito specialists to continue to grow the Program for Mitochondrial Medicine and Metabolism at Seattle Children’s Hospital.
To achieve this long-term vision, raising awareness about this disease is crucial. Today, most people have never even heard of the disease and yet it is one of the fastest growing disciplines in biomedicine. Most physicians are still treating the symptoms associated with the disease without ever finding out what the underlying cause is so part of our mission is to educate physicians and the general public on the disease with the hope that they will come to Seattle Children’s to receive a proper diagnosis.
As we continue to raise awareness about the disease, the need to expand the medical services at Seattle Children’s continues to grow. Of particular importance is the ability to quickly and easily identify mitochondrial disease. New techniques such as needle biopsies as well as the ability to process fresh muscle biopsies and provide DNA sequencing here in the Northwest are important components of building out our program at Seattle Children’s.
Research is the third pillar of our vision. While a cure is still several years away, research studies that provide a better understanding of this extremely complex disease will hopefully result in new medical treatments that will improve the quality of life for children living with the impacts of this disease. Dr. Saneto along with mito researchers Dr. Hahn, Dr. Morgan, and Dr. Sedensky are working on several studies that are in various stages of completion. The guild is supporting their efforts through the establishment of a small research grant program open to investigators at Seattle Children’s and the University of Washington. This year the guild awarded $200,000 in research grants to fund five project.
As the guild heads into its tenth 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.
The Mitochondrial Research Guild is currently looking for new members to assist us in achieving our goals. If you or someone you know is dealing with the effects of mitochondrial disease and you want to make a difference please consider joining the guild.