14 years ago, a seed was planted to grow a community where people could discuss, share and build awareness of the rare disorder, Primary Orthostatic Tremor. This community has grown over the years and in 2008 a handful of courageous people traveled to Rochester Minnesota for the very first OT meeting.
At this meeting in Rochester the idea of building a fund for research was launched. With careful consideration NORD was chosen to be the facilitator of the grant process. NORD has a terrific organization and made the process seamless. In 3 years with the generous support of the OT forum members and friends the goal was reached to start the process.
Everyone here should be very proud of being part of this process!
OT Research Update December 2013:
In August of 2011 the OT Research Fund reached it's initial goal and requests for proposals were submitted to the NORD medical advisory team. In June of 2012, 2 research grants were awarded from the NORD OT fund. Whether anything will develop from these projects is unknown, but something is being done and that is a step forward. We may learn what OT isn’t and there is success in that result too. We are all very thankful.
Discuss the research on the OT Forum - click here
1) Sabine Meunier, MD, PhD
Neurologist, Senior Researcher
Movement Disorders Clinic, Pitié-Salpêtrié Hospital
Title of Study: Is Cerebellum a Potential Therapeutic Target for Primary Orthostatic Tremor (POT)?
The pathogenesis of POT is unknown but the condition is believed to originate in or near the brainstem. Dr. Meunier's proposal describes how the lives of these patients are severely altered, how thus far, medications have limited efficacy, and invasive surgical procedures, including deep-brain stimulation, have not been successful. This will be a pilot study using the non-invasive technique of repetitive transmagnetic therapy (rTMS) focused on the cerebellum. Dr. Meunier and her group have had success with rTMS in a few of their POT patients, and will now formally conduct this pilot study.
(A "pilot study" is a smaller version of a larger clinical study. They are performed to ensure that the ideas or methods behind a research idea are sound, as well as to “work out the kinks” in a study protocol before attempting to launch a larger study.)
Dr. Meunier, together with her colleague, Professor Marie Vidailhet (Head of the Movement Disorders Clinic, Pitié-Salpêtrié Hospital), will combine their resources to perform this pilot study. Dr. Vidailhet has been following approximately 30 POT patients for several years.
A portion of the interim report:
"Our aim was to find out whether an artificial stimulation of the cerebellum ( a part of the brain situated at the back and bottom of your head) can improve the orthostatic tremor. To that end we stimulated daily for 5 days 9 patients with a primary orthostatic tremor. The amplitude of the tremor was measured before and after the stimulations by recording the muscle activity of the legs while the patients were standing.
After the stimulations the patients found that their tremor was not improved yet the muscle activity caused by the tremor was clearly decreased. This suggests that the stimulation was effective yet not enough to be felt as beneficial. In the same time we scanned the brain of the patients by using MRI. The analysis of the brain images has not been done yet."
2) Title of Study: Pregabalin for the Treatment of Primary Orthostatic Tremor
Unfortunately, the doctor's approvals that he needed to initiate the research were not granted, as a result the second study, Pregabalin for the Treatment of Primary Orthostatic Tremor, was not able to proceed within the terms of the original grant agreement. The funds have been reinvested back into the OT Research Fund. When the next fund goal is achieved a proposal can be resubmitted along with any new proposals.
Learn more about how to help fund OT research - click here
Omaha 2012 Meeting and Research:
The meeting and ongoing research study was huge success. Dr. Diego Torres-Russotto and the entire research team from UNMC were spectacular! Many thanks to Peggy for initiating this meeting and taking on the task of organizing the event.
Read the reports about this event by clicking on this LINK , here you will find minutes from the meeting, reporting and feedback by members of the forum, and even discussions about future events.
Research that was initially conducted at this meeting has found Ataxia to be common with OT Patients: Ataxia Is Common In Patients With Orthostatic Tremor : Bhatti, D., Srikanth-Mysore , C., Bertoni , J., Torres-Russotto , D. Omaha, NE, USA
This link contains a description/PDF that was supplied by UNMC prior to the meeting LINK
NORD** Research News
For new and additional research posted on the forum ... click to view forum....
Help support research towards the cause, treatment and cure of Orthostatic Tremor through NORD**
Click here to read more about the program and how to donate, let's work together to find a cure!
**The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
This website is intended to be an informal guide, and is not a substitute for medical advice.