Bursting Barriers
The Tarlov Initiative is a patient-driven awareness and advocacy platform dedicated to advancing recognition, understanding, and medical education surrounding Tarlov cysts and other spinal meningeal cyst disorders.
We are working to break down barriers in medical awareness, challenge outdated assumptions, and bridge the gap between patient experiences and medical understanding. For too long, these conditions have been overlooked, misunderstood, or reduced to incidental findings, leaving many patients struggling to have their symptoms recognized and their experiences taken seriously.
Through patient advocacy, education, research awareness, awareness campaigns, and patient storytelling, we aim to create meaningful change. We are committed to amplifying the voices of those affected, bringing greater visibility to these conditions, encouraging continued research, and advocating for improved medical recognition and understanding.
Our vision is a future where spinal meningeal cyst disorders are no longer dismissed or misunderstood; where patients have access to informed medical guidance and appropriate care; and where clinical understanding continues to evolve alongside the experiences and evidence of those living with these conditions.
We hope to help foster greater communication between patients, medical professionals, and researchers, opening the door to future collaboration, expanded research, and meaningful advancements in care.
We are bursting barriers, challenging the narrative, and moving #BeyondIncidental. Because symptoms deserve to be heard, patient experiences deserve to be validated, and no one should have to fight to have their suffering recognized.
About Us
Born from lived experience, built by community
The Tarlov Initiative was born out of lived experience, years of medical dismissal, chronic pain, and life-changing diagnoses. Behind its creation is a shared understanding of what it means to search for answers, navigate uncertainty, and fight to have your symptoms recognized and taken seriously.
Following her own Tarlov cyst surgery, Brianna Hieber knew she didn't want others to face the same struggles without someone working to make a difference. Having witnessed the widespread lack of awareness and understanding surrounding these conditions, she felt compelled to do something. She knew medical education needed to change, patient experiences needed to be heard, and greater awareness was long overdue. She didn't know exactly where to begin, but she knew she couldn't simply stand by.
Brianna took her first step by reaching out to a Facebook support group, sharing her vision and asking whether others would be interested in helping create change. That simple post became the beginning of something much bigger. Through the community, she connected with Amy Cummings, and their shared determination to improve awareness and advocacy helped transform an idea into a growing initiative.
As the vision developed, Kayla became a vital part of the team, contributing her dedication to research and helping build the educational foundation behind the initiative.
What began with one person's determination grew into a shared mission, bringing together different experiences, perspectives, and strengths with one common purpose: to challenge the misconceptions surrounding spinal meningeal cyst disorders and help ensure that fewer patients experience the same barriers to recognition and understanding.
Today, that purpose continues to guide everything we do. We are working to amplify patient voices, advance education, encourage research awareness, and move the conversation surrounding Tarlov cysts and all spinal meningeal cyst disorders forward.
Our experiences brought us together. Our shared determination to create change is what moves us forward.
Meet the Team
OUR NAME
Why “The Tarlov Initiative”?
Our name represents where the conversation begins, not where our mission ends.
A Recognizable Starting Point
Tarlov cysts are among the most widely recognized and discussed spinal meningeal cyst subtypes. The name is familiar within patient communities and frequently appears on imaging reports, making it an accessible starting point for people searching for answers.
Creating Momentum for Broader Recognition
Our mission extends beyond Tarlov cysts to include all spinal meningeal cyst disorders. We believe increasing recognition of this familiar subtype can help bring greater attention to less recognized conditions, including spinal arachnoid cysts and intrasacral meningoceles.
A Name That Connects Patients and Advocacy
A clear, searchable name helps newly diagnosed patients find resources, connect with others, and feel less alone. It also gives advocates a recognizable identity and a shared platform to raise awareness.
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A word chosen with intention
For many people living with spinal meningeal cyst disorders, the word incidental can become more than a radiological description. It can shape how their imaging findings are interpreted, how their symptoms are considered, and whether further evaluation is pursued.
Although not every spinal meningeal cyst is symptomatic, research and patient experiences highlight the importance of accurate recognition, appropriate clinical assessment, and continued medical education. Tarlov cysts, spinal arachnoid cysts, meningeal diverticula, and other related disorders each deserve to be understood according to their individual characteristics and potential clinical significance.
Through our #BeyondIncidental campaign, The Tarlov Initiative aims to challenge outdated assumptions, raise awareness of these conditions, and amplify the voices of the people living with them.
WHY “Incidental"
