Tarlov Cyst Disease Foundation

Programs: Tarlov cyst disease foundation 2016 accomplishments-highlightsthe board of directors of the tarlov cyst disease foundation had five board meetings in 2016 in the months of january, march, june, october and november. Additional written update reports were provided from the executive director in august and december 2016, in addition to frequent emails exchanged throughout the year. Kieran murphy m. D. Interventional neuroradiologist from toronto canada spoke at the university of tn medical center on january 19th to the radiology dept. , graduate school of medicine, residents, fellows and staff of the radiology dept. And included in his presentation the importance for radiologist to report the tarlov/perineural cysts when imaged and not to ignore this pathology; he further explained the pathophysiology and symptomatology of this diagnosis. The tarlov cyst disease initiative update at johns hopkins: phase 1 of research began with 7 families with two or more biologic members who have been diagnosed with symptomatic tarlov/perineural cysts; the total of the combined familial cases in phase 1 is 22. All individuals were contacted by the foundation exec. Dir. To share the opportunity to be participants in the research, to provide research information via q&a and fact sheet documents, and johns hopkins genetics research team information. The process of the genetics research teams plan, under the direction of the director of the smilow genetics center, dr. Hal dietz, m. D. Phd was explained. The funding for this research was provided in 2015 by private funding and matched funding from the state of md. A release of patient information from the participants was provided to the hopkins genetics counselor and phone appointments were established for interviews with the potential research participants, prior to signing a consent form for participation in the research. Acquisition of samples for testing were acquired throughout the year and genome sequencing was in process by all participants by august 2016. Numerous meetings were planned with the research team and the foundations exec. Dir. During the year with updates provided. In june, the foundation executive director traveled to johns hopkins and met with the research team and other physicians throughout johns hopkins hospital. The tarlov cyst disease professorship will be awarded in sept. 2017. In may 2016, rare disease report provided an advocacy spotlight on the tarlov cyst disease foundation, written by ruth j. Hickman, m. D. In june 2016, the board of directors developed a job description for a part time administrative assistant position and discussed potential hourly salary to be included in the 2017 budget. The exec. Dir. Will conduct interviews in the future with potential applicants. Organizational plans began with the board of directors for updating the foundations website and potential transition to a new webhost in the future. An added feature to the website was discussed to provide translations for multiple languages on the site, since the foundation is contacted by patients from around the world. In late august 2016, the tarlov cyst disease foundation was selected for the 2016 best of knoxville award in the research category by the knoxville award program. Plans began for the foundations tarlov cyst disease information exhibits at selected medical conferences possibly in late 2017 & definitely in 2018. The targeted clinical conferences are: family practice, neurology, radiology, neurosurgery, urology, gynecology, gastroenterology, and pain management. These medical practices are most frequently seeing patients with symptoms of tarlov/perineural cysts; however they are often not recognizing the multi-systems symptoms as relevant to . Printed brochures of a physicians guide to tarlov cyst disease and a powerpoint slide presentation were planned. A new treasurer was nominated and unanimously elected by the board of directors in october 2016. Tammy zinser-minochas orientation began immediately and she served faithfully throughout the busy last quarter of the year. In november teleconference meetings were attended by the executive dir. With representatives of the academy of radiology research, cdc and the ceo of worldwide syringomyelia & chiari foundation to discuss issues with failure to report findings on imaging studies of tarlov/perineural cysts, syringomyelia and chiari malformation and to increase understanding of this causing delay in diagnosis of these spine pathologies. In november a tarlov/perineural cyst epidemiology manuscript was submitted to the american journal of neuroradiology by co-authors anne louise oaklander, m. D. Phd , professor at harvard medical school and neurologist at mass. General, diane finkelstein, phd bio-statistician, harvard and mass. General, and reta h. Hiers, rnc, tcdf exec. Directorin december a comprehensive newsletter was sent to the foundations members and donors, tarlov cyst researchers, and the medical/scientific advisory board recapping the years highlights and the foundations commitment to continuing our efforts in patient advocacy, research, and education about the life altering diagnosis of tarlov /perineural cysts. It was a very busy year! A few statistics/data regarding foundation contacts throughout the year: more than 800 contact us submissions were sent to the foundation from patients and physicians throughout the world, 454 patient surveys were completed, 58 new members and donors, and too numerous to count emails and phone calls were received; numerous advocacy efforts were requested, on behalf of patients with their insurance co. , national healthcare systems, physicians, ssa, workers comp. Etc. And were promptly responded to throughout the year.