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.
The objectives of the Foundation are to:
Our founder was diagnosed with Tarlov cysts. It became apparent to her that very few advances had been made in the understanding of the Tarlov cysts in the medical community worldwide, since they had first been described by Isadore M. Tarlov, M.D., in 1938. This realization led her to make more inquiries and contacts internationally to seek information and determine 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. 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 patient advocacy, research and education. The father of a young Tarlov cyst patient and a nurse/medical educator, 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.
Years of efforts and fulfilling the goal 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 promote and provide Tarlov cyst research funding 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.
Gail Nelson – APRN, BC – President
Iris Kachuck, PhD, Education – Vice President
Sandy Roof – Secretary
Special Events Professional, Tarlov Cyst Patient
Cathy G. Carlomagno – Treasurer
Communications/Marketing Professional
Michelle Lear
Licensed Social Worker
