Welcome back to the Tarlov Cyst Disease Foundation! đź‘‹
We’re so glad to be reconnecting with our community. In the months ahead, we’ll be refreshing our website, shaping a new strategic plan, and rebuilding ways to support and stay in touch with you.
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In Memoriam: Sandra “Sandy” Lynn Allen Roof (1960–2026)
It is with profound sadness that the Tarlov Cyst Disease Foundation announces the passing of our dear friend and colleague, Sandra “Sandy” Lynn Allen Roof, on Saturday, April 18, 2026, at Vanderbilt University Medical Center. She was 65.
Living with Tarlov cyst disease, Sandy understood firsthand the urgency of our work and the importance of being heard, believed, and supported. She translated her lived experience into nearly two decades of dedicated service to the Tarlov Cyst Disease Foundation, playing an instrumental role in the founding of the Foundation in 2006. Sandy served on the Foundation’s Board of Directors from the beginning, serving most recently as Vice President. Outside of her commitment to the Tarlov Cyst Disease Foundation, professionally, Sandy was an accomplished event planner.
Sandy embodied the Foundation’s values. Her compassion shaped how we listen to and stand with patients and families. Her commitment to scientific integrity reinforced our dedication to rigorous, evidence-based research. She championed clarity so that medical information could reach the people who need it most, and she modeled collaboration by drawing patients, researchers, clinicians, and partners together around a shared purpose. Above all, she believed in the innovation that will one day realize our vision: a future where Tarlov cyst disease is fully understood, accurately diagnosed, effectively treated, and ultimately cured.
A graduate of McKenzie High School and the University of Tennessee, Knoxville, Sandy was a proud daughter of McKenzie, Tennessee, where she built a life of service alongside her husband, Ron. She is survived by Ron; her sons, Trevor Roof of McKenzie and Hunter (Allie) Roof of Edgewater, Maryland; her mother, Ruby Sanders Allen; her brother, Wayne (Glenda) Allen; and two cherished grandchildren. She was preceded in death by her father, Charles Allen.
Sandy’s voice, her warmth, and her unwavering belief in what this Foundation could become have shaped who we are. We will honor her by continuing the mission she helped create: to improve the lives of people affected by Tarlov cyst disease by accelerating research, educating the medical community, and providing evidence-based information and support.
On behalf of the Board of Directors, staff, and the entire Tarlov cyst community, we extend our deepest condolences to Ron, her children and grandchildren, her mother, and all who loved her. Sandy will be profoundly missed.
With gratitude for a life given in service,
Tarlov Cyst Disease Foundation Board of Directors
Founder, former Executive Director and President of the Tarlov Cyst Disease Foundation
For more than two decades, Reta Honey Hiers, RN, MEd, has been a guiding force in the Tarlov cyst community—transforming personal passion into a powerful movement for awareness, education, and research. A registered nurse and certified medical educator, Reta’s career was devoted to advancing health education. With a degree in education from the University of Tennessee, she taught nurses and other health professionals while serving as the Director of Education at East Tennessee Children’s Hospital, where she directed continuing medical education and staff education programs for 20 years.
Drawing on her personal and professional experience, Reta founded the Tarlov Cyst Disease Foundation in 2006, after receiving her own Tarlov cyst diagnosis. Her vision for the Foundation grew out of frustration with the status quo—the lack of real resources for Tarlov cyst patients. From finding and communicating with other Tarlov cysts patients online to establishing and formalizing the Foundation as a 501(c)(3) nonprofit organization, Reta’s tenacity and vision never wavered. Her leadership has connected patients, clinicians, and researchers around the world—promoting collaboration, supporting groundbreaking studies, and improving the understanding of Tarlov cysts within both the medical community and general public.
Reta has represented patients and the Foundation nationally and internationally, speaking at the US National Institutes of Health, co-authoring the first article published on Tarlov cysts in the Journal of Pain, and sharing research at conferences hosted by the National Organization for Rare Disorders (NORD) and the International Association for the Study of Pain (IASP). Reta led the process to secure an International Classification of Diseases, 10th Revision (ICD-10) code for Tarlov cysts, formally recognizing Tarlov Cyst Disease in the US, giving the US medical community a code to use for insurance reimbursement, and validating ongoing and future research. For her dedication and commitment to the Tarlov Cyst Disease Foundation and the Tarlov cyst community, Reta was honored in 2017 with the creation of the endowed Reta Honey Hiers Assistant Professorship in Tarlov Cyst Disease in the Department of Neurosurgery at Johns Hopkins Medicine.
Beyond her professional accomplishments, Reta’s warmth and dedication have inspired countless individuals navigating life with Tarlov cysts. During her tenure as the Foundation’s Executive Director, Reta spent countless hours listening, educating, advocating, and ultimately improving the lives of a multitude of Tarlov cyst patients. Her efforts to help those patients find a physician, secure insurance coverage or Social Security Disability Insurance, understand treatment options, or explain their condition to loved ones, are just some of the ways that she provided support and encouragement. Her passion to improve awareness and understanding for Tarlov cysts and to help patients feel heard and seen was selfless and steadfast. She remained a tireless advocate, mentor, and source of hope for patients and families worldwide until her retirement due to health reasons, formally stepping down from her leadership role with the Tarlov Cyst Disease Foundation in 2024.
A native of Tennessee, Reta has lived and worked in Knoxville for most of her adult life. She was married to Don Hiers for 57 years until he passed away in 2022, and is the proud mother of two sons, Greg and Chad, and two grandchildren, Zach and Hadley.
The Tarlov Cyst Disease Foundation honors Reta Honey Hiers for her enduring vision, compassion, and leadership. Her work continues to shape the future of research, education, and patient advocacy for Tarlov cyst patients worldwide.