Troy Townsin is originally from Melbourne, Australia and moved to the Pacific Northwest in 2004 where he is a celebrated author. Most importantly, Troy is the father of Felix and Lexi and started the Cure Blau Syndrome Foundation to help his daughter Lexi.
Cheryl-Lynn Townsin started the Cure Blau Syndrome with her husband, Troy, to fight for a cure for her daughter, Lexi. Cheryl-Lynn works at Royal Roads University in Victoria, Canada where she is also earning her graduate degree in Global Leadership.
Erica Howell, Ph.D., is a Professor in the Department of Special Education at California State University, Fullerton. She has an 11 year old daughter with Blau Syndrome.
Erica Howell, Ph.D.
Jon Howell is an attorney in Orange County, CA. He provides legal counsel to the Cure Blau Syndrome Foundation. His daughter showed her first symptoms of Blau Syndrome at 6 months.
Ingrid Murray lives in Comcox Valley BC, Canada and worked 40 years in the Business Administration and Information Technology Industries. She holds a Master's Degree in Business Analysis. After the loss of her granddaughter Lexi in 2019, Ingrid continues to advocate for a cure in her remembrance.
Medical Advisory Board
Carine Wouters, M.D., Ph.D.
Medical Advisory Board Member
Carine H Wouters is a pediatric rheumatologist working at Leuven University Hospital in Leuven, Belgium.
She is head of the clinical department of pediatric rheumatology and immune-inflammatory diseases at the Leuven University Children’s hospital, and professor in Pediatrics at Leuven University. She currently is the executive board member for pediatric rheumatology in the European Reference Network for Rare Immune Deficiency, Autoimmune and Autoinflammatory diseases.
Her major research interests comprise systemic juvenile idiopathic arthritis and macrophage activation syndrome (in collaboration with research group of Immunobiology, Patrick Matthys, Leuven), autoinflammatory diseases (in collaboration with research group Genetics of Autoimmunity, Adrian Liston) as well as granulomatous inflammatory diseases in children with a special interest to Blau syndrome (in collaboration with Carlos Rose, Wilmington, US).
1 KU Leuven - University of Leuven, Department of Microbiology and Immunology, Laboratory of Adaptive Immunology & Immunobiology, B-3000 Leuven, Belgium
2 University Hospitals Leuven, Department of Pediatrics, B-3000 Leuven, Belgium
Carlos Rose, M.D.
Medical Advisory Board Member
Information coming soon.
Ruth Napier, Ph.D.
Medical Advisory Board Member
Dr. Napier is the principal investigator of a translational immunology laboratory at the VA Portland Health Care System and Oregon Health & Science University in Portland, OR. She has extensive experience in basic and clinical research in the fields of microbiology, immunology, autoimmunity, inflammation, and drug development.
Dr. Napier received her PhD from Emory University in Atlanta, GA where she repurposed a previously FDA-approved cancer drug as a novel immunotherapy to treat tuberculosis, which is currently in a Phase II clinical trial. She then completed two postdoctoral fellowships at Oregon Health & Science University in the Departments of Pulmonary and Critical Care Medicine and Molecular Microbiology and Immunology. Dr. Napier’s research program is focused on understanding how microbial sensors, including the gene NOD2 (which is linked to Blau Syndrome), control pathogenic cellular responses in autoimmune and autoinflammatory diseases such as autoimmune arthritis and uveitis, Blau Syndrome, and Yao Syndrome.
Her long-term research goal is to use this information towards discovery of biomarkers associated with hard-to-diagnose inflammatory diseases, and development of novel biologics that aim to reprogram pathogenic immune cells back to a quiescent state and thereby thwart progression of disease.
U.S. & Canada Outreach Liaison
Mallin Xiaobei Jiang
Asia Outreach Liaison
Patient Advocacy Liaison
Taylor Kandler is a second year medical student at the University of British Columbia (2022) and is originally from central, northern British Columbia - Prince George. She completed her undergraduate degree at the University of Northern BC (UNBC) in Biomedical Sciences, with a minor in Indigenous Studies.
Following her interests, she finished a global health program at Harvard and an Indigenous program at the Johns Hopkins Bloomberg School of Public Health. Post-graduation she worked on a maternal and child health ketamine program at Massachusetts General Hospital and the Division of Global Health and Human Rights, Innovations to improve access to anesthetic in limited resource settings. She is really enjoying her time in medical school as she discovers all the amazing paths that medicine can take her.
Bailey Pierson is a fourth year student at George Fox University in Newberg, Oregon, where she is earning a degree in health sciences. She will be completing her undergraduate degree in May of 2020 and plans to work towards her masters degree to become a nurse practitioner in either family medicine or women's health. Her interests include endocrinology, fertility, genetics, and holistic health.
Bailey is also passionate about educating on how to live a healthier lifestyle reducing environmental toxins to improve overall health. Bailey is looking forward to being part of this wonderful team of professionals and furthering her knowledge of Blau Syndrome!
Bryn Longcraft-Harris is a second year medical student at the University of British Columbia's Island Medical Program. She was born and raised in Victoria, but moved to Halifax to earn her undergraduate degree at Dalhousie University. She graduated in 2018 with a degree in Medical Sciences in Honours, which looked at sport and recreational related injuries in Nova Scotia. She has spent the past three summers in the Anapolis Valley working at Brigadoon Village, a camp for children with chronic health conditions. This experience, and her years of coaching swimming lessons, has solidified her interests in pediatrics.
Bryn is looking forward to the opportunity to learn more about rare diseases and she is excited to work with the Cure Blau Syndrome Foundation to improve the lives of adults and children like Lexi.
Cynthia Flores attends California State University, Fullerton, U.S., and is majoring in Biology. Cynthia started her work with the Cure Blau Syndrome Foundation during the summer of 2019 as an intern with CSUF's Allied Health Academy. Inspired by her sister who has battled cancer since a child, Cynthia aims to work as a genetic counselor or fertility specialist. She loves to garden, cook, and go to the beach!