ABOUT US

WHO WE ARE

The Tarlov Cyst Society is a CRA-registered charity dedicated to improving the lives of individuals affected by Tarlov Cyst Disease. Our mission is to promote public education, support peer connection, and encourage research that contributes to the early identification, understanding, and improved care of this complex condition.

We aim to reduce the isolation many patients experience by providing access to reliable information and compassionate peer-led support, and by facilitating informed communication between patients and medical professionals.

WHAT IS TARLOV CYST DISEASE?

Tarlov Cyst Disease is a rare and often under-recognized spinal nerve root disorder involving cerebrospinal fluid-filled cysts. These cysts, most commonly located in the sacral region of the spine, can in some individuals cause a wide range of symptoms—such as chronic pain, neurological dysfunction, and bladder or bowel issues.

Due to limited awareness and understanding, individuals with symptomatic Tarlov cysts commonly experience delays in diagnosis and inconsistent access to appropriate care. This can result in prolonged distress, functional impairment, and reduced quality of life.

HOW WE HELP

Public Education: We provide evidence-informed resources to help patients, caregivers, and healthcare professionals better understand Tarlov Cyst Disease and its potential impacts.
Peer Support: Through virtual meetings, moderated groups, one-on-one conversations, and email outreach, we offer patients a compassionate space to share experiences, learn from one another, and feel less alone.
Knowledge-Sharing: We collect and distribute current research and clinical insights to help patients make informed decisions and to support professionals interested in learning more about the disease.
Collaboration with Researchers and Clinicians: We seek to foster partnerships with those conducting research or providing care to Tarlov Cyst patients, with the goal of improving long-term outcomes and supporting evidence-based care.

Meet the Team

Janet Kaszonyi

Community Engagement & Advocacy Coordinator

Janet Kaszonyi brings a rich background in education, special-needs advocacy, and the arts to her role as Community Engagement & Advocacy Lead at the Tarlov Cyst Society. A TCD patient herself, Janet combines personal insight with professional experience to drive outreach, support, and meaningful change for the Tarlov Cyst Disease patient community.

Sherri Jones

President, Founder, and Canadian Group Moderator

Sherri Jones is the founder of the Tarlov Cyst Society—a journalist, advocate, and quiet force for change who turned a personal health crisis into a global movement for recognition and reform.

Joan Ference

Treasurer

Compassionate Advocate. Dedicated Leader. Tarlov Cyst Survivor.

Joan Ference brings over five decades of lived experience to her role as Treasurer of the Tarlov Cyst Society. Diagnosed with Tarlov Cyst Disease after years of unexplained pain, Joan’s journey is one of resilience, strength, and a deep commitment to making a difference.

Heather Forgey, RMT, R. Ac, BSc

Research & Patient Advocacy Advisor

Clinical Thinker. Patient Advocate. Research Navigator.

Heather Forgey brings a rare blend of clinical insight and lived experience to her role at the Tarlov Cyst Society. A Registered Massage Therapist and Acupuncturist with a BSc in Psychology and training in Applied Research, Heather has both treated patients in pain and endured it herself.

Diagnosed with Tarlov Cyst Disease, she personally understands the complexity and frustration faced by patients seeking care. Heather now uses her voice, clinical background, and research acumen to help the Society navigate emerging evidence, build patient-centered resources, and advocate for recognition and change..

Dawn Douglas

Leader, Australia & New Zealand Tarlov Cyst Society Group

Community Builder. Patient Mentor. Relentless Advocate.

Dawn Douglas is the founder and lead administrator of the Tarlov Cyst Society group serving Australia and New Zealand. Based in the stunning Blue Mountains of New South Wales, west of Sydney, Dawn has become a cornerstone of support, guidance, and unity for patients across the region.

Donna Corley

Founder, Group Leader - Tarlov Cyst Society of America

Advocate. Educator. Voice for the Voiceless.

Donna Corley is the founder and leader of the Tarlov Cyst Society of America. Since 2013, she has created a safe, supportive space for patients navigating the challenges of Tarlov Cyst Disease—both before and after treatment. What began as a private support group has evolved into a trusted resource for education, empowerment, and advocacy across the United States.