Erica Howell, Ph.D.
Executive Director
Erica Howell, Ph.D., is a Professor in the Department of Special Education at California State University, Fullerton. Her daughter, Keira, has Blau syndrome.
About the Foundation
A network of parents, patients, scientists and doctors.
The Cure Blau Syndrome Foundation brings together families living with Blau and the researchers and clinicians working to understand it. Together we aim to:
- Fundraise and foster steps toward a cure and effective treatment options.
- Increase awareness among medical professionals and scientists.
- Provide education and advocacy opportunities for our Blau syndrome community.
Our story in brief
It began with one little girl.
Troy and Cheryl-Lynn Townsin founded the Cure Blau Syndrome Foundation to help their daughter, Lexi, who was born with Blau syndrome. Lexi was the original inspiration for the Foundation.
Lexi passed away in 2019. We ran out of time before we could find a cure for Lexi, but we carry on in her legacy for everyone who continues their battle with Blau.
Foundation members
Families who turned a diagnosis into a mission.
Troy Townsin
Founder, Board Member
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. He started the Cure Blau Syndrome Foundation to help his daughter Lexi, who we lost in 2019.
Cheryl-Lynn Townsin
Board Member
Cheryl-Lynn Townsin started the Cure Blau Syndrome Foundation with her husband, Troy, to fight for a cure for their daughter, Lexi, who passed away in 2019. Cheryl-Lynn works at Royal Roads University in Victoria, Canada, where she is also earning her graduate degree in Global Leadership.
Jon Howell, J.D.
Board Member
Jon Howell is an attorney in Orange County, California. He provides legal counsel to the Cure Blau Syndrome Foundation. His daughter showed her first symptoms of Blau syndrome at six months.
Jeremy Engdahl-Johnson
Board Member
Jeremy Engdahl-Johnson is senior director of global communications at a leading technology and consulting firm. His daughter has Blau syndrome.
Medical Advisory Board
Expert advice guiding the search for a cure.
Our Medical Advisory Board provides expert advice guiding our search for effective treatment options and, ultimately, a cure for Blau syndrome.
Carine Wouters, M.D., Ph.D.
Medical Advisory Board Member
Carine H. Wouters is a pediatric rheumatologist 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 is the executive board member for pediatric rheumatology in the European Reference Network for Rare Immune Deficiency, Autoimmune and Autoinflammatory Diseases.
Her research interests include systemic juvenile idiopathic arthritis and macrophage activation syndrome (with the Immunobiology research group of Patrick Matthys, Leuven), autoinflammatory diseases (with the Genetics of Autoimmunity group of Adrian Liston), and granulomatous inflammatory diseases in children, with a special interest in Blau syndrome (in collaboration with Carlos Rose, Wilmington, US).
Affiliations: KU Leuven, Department of Microbiology and Immunology, Laboratory of Adaptive Immunology and Immunobiology; University Hospitals Leuven, Department of Pediatrics.
Carlos Rose, M.D.
Medical Advisory Board Member
Carlos Rose, M.D., is a pediatric rheumatologist in Wilmington, US, and a long-time collaborator with Dr. Carine Wouters on Blau syndrome research. A full profile is coming soon.
Ruth Napier, Ph.D.
Medical Advisory Board Member
Dr. Ruth J. Napier is an Associate Professor in the Rheumatology Division at the University of Colorado Anschutz Medical Campus. Her research focuses on the immune mechanisms driving autoinflammatory disease, with direct relevance to understanding and advancing treatments for Blau syndrome. She gave the keynote at the 2026 Blau Summit.
Dr. Napier previously led a translational immunology laboratory at the VA Portland Health Care System and Oregon Health & Science University in Portland, Oregon. She has extensive experience in basic and clinical research in microbiology, immunology, autoimmunity, inflammation and drug development.
She received her Ph.D. from Emory University in Atlanta, where she repurposed a previously FDA-approved cancer drug as a novel immunotherapy to treat tuberculosis, which went on to a Phase II clinical trial. She then completed two postdoctoral fellowships at Oregon Health & Science University, in Pulmonary and Critical Care Medicine and in Molecular Microbiology and Immunology. Her research program studies how microbial sensors, including NOD2 (the gene 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 goal is to use this work to discover biomarkers for hard-to-diagnose inflammatory diseases and to develop new biologics that reprogram pathogenic immune cells back to a quiescent state, halting the progression of disease.
Blau Ambassador Program Director
Dr. Melinda Pierson
Dr. Pierson directs the Blau Ambassador Program and, when needed, helps students develop a project goal based on their skills and interests.
Every dollar, every hour, every voice matters.
Rare disease research only moves when families and supporters push it. Your gift funds research directly, and your story in the registry gives scientists data they cannot get anywhere else.