Connecting families and fueling research into microtubule-associated serine/threonine kinase (MAST) genetic mutations to improve the quality of life and develop therapies to support affected patients and families.
Goals for 2023-2024
Raise $100,000 to use as a competitive award for research into the MAST family of genes
Establish a list of 250 potential patients for future research into the MAST genes
History of the Foundation
The MAST Genes Research Foundation was started in 2022 by two families with children suffering from the impact of mutations in the MAST family of genes. They shared a vision for a foundation to support research into the entire MAST family of genes, not just their own children’s specific mutations.
The MAST family of genes enjoys current interest from multiple labs around the world, along with several published papers already. Given the momentum already building, this foundation can serve as a catalyst for additional and more comprehensive research.
In late 2023, we joined the JumpStart program with the Orphan Disease Center. The Orphan Disease center, a center within the Perelman School of Medicine at the University of Pennsylvania, works closely with patient groups and foundations, pharma and biotech, and the academic community to drive therapeutic development for rare diseases.
- Connect patients/families to improve the time to diagnosis
- Connect patients/families and researchers to facilitate interactions and learning opportunities
- Connect patients/families together so those with time, funds, and abilities can easily apply their gifts to MAST Genes research and advocacy
- Raise funds to support competitive research projects and research awards
Meet the Board
Cody is currently the Director of Solutions Architecture at a marketing agency called 9thWonder. Cody has over thirteen years of nonprofit leadership experience, and he is also the president and founder of a computer programming educational nonprofit called Code4Kids. Cody is the parent of a MAST2 kid (see Charlie’s story). When he isn’t helping with Charlie or fielding all of life’s questions from his 7-year-old son, Cody can be found tinkering with his 3D printers and laser cutters.
Scott is a Research Lab Supervisor in the Center for Developmental Biology and Regenerative Medicine at Seattle Children’s Research Institute. Scott earned his PhD in Molecular and Medical Genetics at Oregon Health & Science University in Portland, OR. He did further training in mouse genetics at the Fred Hutch in Seattle, WA. Scott has over 22 years of experience in molecular genetics and model organism development. When not reordering Grayson’s medications and supplies, cloning large genes, or engineering mutant zebrafish in the lab, Scott enjoys spending time outdoors with Kim and their twins, camping, and tennis.
Becca has spent many years improving the health and wellbeing of others. She worked for many years in the field of exercise physiology helping those with chronic health conditions, five of those years working with those experiencing Alzheimer’s disease and/or dementia. She now manages data working in public health and has volunteered with the Epilepsy Foundation of Colorado. She is mom to Charlie, who has a de novo MAST2 mutation, and an energetic 7 year old. After seven years of searching for a genetic diagnosis for Charlie she is determined to help support the scientific community as it learns more about MAST diseases.
Kim is a Principal Investigator in the Center for Integrative Brain Research at Seattle Children’s Research Institute and an Assistant Professor in the Department of Pediatrics, Division of Genetic Medicine at the University of Washington. She has a PhD in neurobiology from the University of Chicago and over 20 years of research experience in the genetics of neurodevelopmental disorders. Kim is the mom of a son with a MAST4 mutation (see Grayson’s story). She can be found taking Grayson and his twin sister to explore accessible playgrounds and squeezing in time for yoga.
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