177. Pamela Silberman, Co-founder, Board Member, and Treasurer of STANA, on Smell and Taste Disorders, Patient Advocacy, and Public Health Awareness

Did you know that a loss of smell or taste can be an early indicator of Parkinson's, Alzheimer’s and other dementias? And in an environment where smell and taste disorders are underdiagnosed, underfunded, and often dismissed, how can an association step in to educate patients, influence research, and push for better care?In this episode of Associations Thrive, host Joanna Pineda interviews Pamela Silberman, Co-Founder, Board Member, and Treasurer of the Smell and Taste Association of North America (STANA). Pamela discusses:How STANA is the first patient organization in the United States, Canada, and Mexico focused on people living with smell and taste dysfunction.The many causes of smell and taste disorders, including congenital conditions, infections, allergies, traumatic brain injuries, sinus issues, aging, and COVID-19.How millions of people are affected by smell and taste dysfunction.Pamela’s personal journey after permanently losing her sense of smell following a sinus infection, and how that experience led her to help found STANA.Why STANA advocates for routine and universal smell and taste testing, both to improve diagnosis and to identify links to other conditions such as Parkinson’s, Alzheimer’s, and other dementias.How smell and taste dysfunction can affect mental health, nutrition, safety, social confidence, and overall quality of life.How STANA supports patients through education, virtual community, programming, and practical conversations about cooking, nutrition, texture, and adapting to flavor loss.How STANA is pushing for more patient-centered research by training patients to serve as research partners, not just research subjects.References:STANA Website