History of the Tarlov Cyst Disease Foundation
Founded by Reta Honey Hiers, a nurse educator in Tennessee living with an “uncountable” number of Tarlov cysts, to help others navigate the disease.
Granted federal 501c3 non-profit status.
Launched website as revolutionary online resource for people with Tarlov cysts.
Began conducting patient surveys and sharing findings with the medical community to shed more light on the disease. As of mid-2026, over 4,200 patients have responded to the survey.
Dr. Frank Feigenbaum, a medical advisor to the Foundation, started offering surgical treatment of Tarlov cysts.
Awarded first research grant to Dr. Anne Louise Oaklander of Massachusetts General Hospital and Harvard Medical School, in collaboration with the National Organization for Rare Disorders (NORD), to advance evidence-based understanding of Tarlov cyst disease.
Published Hiding in Plain Sight: A Case of Tarlov Perineural Cysts in the Journal of Pain.
Led advocacy efforts that resulted in the US Centers for Disease Control adding unique diagnosis code G96.191 to its international classification of diseases (ICD), allowing for more accurate tracking of Tarlov cyst disease in patient records. Fellow advocates included Dr. Rudy Shroat, Dr. Anne Louise Oaklander, and Dr. Frank Feigenbaum.
The Reta Honey Hiers Professorship for Tarlov Cyst Disease established at The Johns Hopkins University through $1.25 million endowment from Mary Ellen Pease and Charles Scheeler and $1.05 million from the state of Maryland’s E-Nnovation Initiative. The aim is to advance research and clinical care relevant to neurogenetics and interventional neuroradiology in the study and management of Tarlov Cyst Disease. The endowed assistant professorship has been held by Dr. Hal Dietz, Dr. Justin Caplan, and Dr. Timothy Witham.
Supported a genetic research initiative by recruiting about 50 people with Tarlov cysts for a study by Dr. Hal Dietz and Dr. Nora Soberiera. Through whole-genome sequencing, the study produced a list of candidate genes linked to Tarlov cyst disease and established the Foundation’s first biorepository-style research collaboration.
Contributed to an article Journal of Neurosurgery on treatment options for Tarlov cysts.
Received a large bequest from the estate of Carolee Kamin, providing new resources to advance the Foundation’s mission.
Founder Reta Honey Hiers retires after nearly two decades of service.
Hired new Executive Director and committed to renewing its mission.
Board of Directors revised the Foundation's vision, mission, and values and adopted the Foundation’s first strategic plan committing to a competitive research grant program, a HIPAA-compliant patient registry, targeted medical education initiatives, and a professionally-led organization positioned to accelerate the pace of progress toward a future where Tarlov cyst disease is fully understood, accurately diagnosed, effectively treated, and ultimately curable.