Our Mission

Our Objectives

Our History

Our Board of Directors

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Our Mission

The Tarlov Cyst Disease Foundation is a volunteer-based, 501(c)(3) non-profit foundation dedicated to the research, improved diagnosis and development of successful treatments and outcomes for symptomatic Tarlov cysts.

The Foundation is incorporated exclusively for scientific, educational, and charitable purposes that will seek to improve the level of understanding, diagnosis and treatment of Tarlov cysts.

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Our Objectives

The objectives of the Foundation are to:

1. promote research for Tarlov Cyst Disease

2. collaborate with and educate those in the medical field and the general public about Tarlov Cyst Disease, both nationally and internationally

3. provide resources to Tarlov cyst patients, their families and friends, physicians, and the public

4. conduct surveys with both Tarlov cyst physicians and patients to identify prevalence, determine etiology, and clarify symptomatology as well as share and analyze outcomes of surgery and other treatments of Tarlov cysts

5. publish research results including trends in diagnosis, prognosis, treatments, outcomes and other relevant medical information

6. encourage support and raise funds to promote and accomplish these specific objectives and purposes of the Foundation.

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Our History

In 2000, our founder was diagnosed with Tarlov cysts. It soon became apparent that very few advances had been made in the treatment of Tarlov cysts, since they had first been described by Isadore M. Tarlov, M.D., in 1937. This realization led her to make more inquiries and contacts internationally to seek information and treatment options.

While seeking research institutions and organizations that might be conducting Tarlov cyst research, it became evident that no one was advancing the cause to determine the etiology of these cysts or their treatment. The vast majority of the international medical community seemed misinformed or uninformed regarding the life-altering symptoms caused by Tarlov cysts. Research and continuing medical education (CME) within the medical community seemed non-existent on the diagnosis of Tarlov cysts and physicians were ill prepared to treat them.

Various medical colleagues, medical professional organizations and the National Organization for Rare Disorders (NORD) were contacted to determine what they might offer in assistance to begin a foundation. A small group of patients with Tarlov cysts felt that the only solution was a Foundation dedicated to Tarlov cyst research and education. In 2004, the father of a young Tarlov cyst patient and a nurse who is a Tarlov cyst patient, drafted the initial bylaws for such an organization. In 2006, the Foundation was incorporated as a non-profit organization. A team of 3 patients and 2 attorneys wrote new revised bylaws before filing for a 501(c)(3) status as a tax-exempt non-profit organization. In 2007, the 501(c)(3) application was approved by the IRS.

Seven years of efforts and dreams to legally establish the Foundation, specifically dedicated to finding a cause and cure through medical research and education, became a reality almost 70 years after Dr. Tarlov first described Tarlov cysts to the medical community.

The Tarlov Cyst Disease Foundation is the only foundation in the world that exists solely to support those diagnosed with Tarlov cysts, their families and the medical community, while also working to support Tarlov cyst research and education. We believe our joint efforts will further the Foundation’s vision of a future in which Tarlov cyst disease is well understood, accurately diagnosed and easily treated, so that those afflicted by Tarlov cysts will not suffer needlessly.

We look forward to the future. We hope you will join us in meeting our objectives.

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Our Board of Directors

Reta Honey Hiers, R.N., C. - President/Director
Nurse, medical educator, Tarlov cyst patient 
retahoneyhiers@tarlovcystfoundation.org

Dona Dutcher - Vice President/Director
Patient survey advisor, Tarlov cyst patient 
donadutcher@tarlovcystfoundation.org

Sandy Roof - Secretary/Director
Special events professional, Tarlov cyst patient 
sandyroof@tarlovcystfoundation.org  

Cathy G. Carlomagno - Director at large
Communications/marketing professional 
cathycarlomagno@tarlovcystfoundation.org 

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