The Orthostatic Tremor Research and Education Fund
(01130710) at the University of Nebraska Foundation. In 2012 and 2014, the University of Nebraska Medical Center (UNMC) hosted the largest research studies into OT under the leadership of Dr Diego Torres-Russotto and the research team at UNMC. The funding for each of these previous studies was provided through the UNMC. To continue and build upon this research the UNMC has established a new fund specifically for OT research. Information about how to donate can be found below. Please donate to ensure that this very important research continues.
“We are proud to partner with the University of Nebraska Foundation,” said Dr. Torres-Russotto. “The Fund is under the care of our Department, and it can only be used for Orthostatic Tremor. Any of our researchers in OT may apply and funds will be granted based on scientific merit and criteria to benefit OT.”
Learn more by clicking on the link below. The Orthostatic Tremor Research and Education Fund
UNMC HOSTED LARGEST STUDY EVER ON RARE MOVEMENT DISORDER - September 23, 2014
“It’s a very rare condition, so it’s quite an achievement to get so many patients to congregate in Omaha,” said Diego Torres-Russotto, M.D., a movement disorders specialist at the University of Nebraska Medical Center. “OT is a miserable disease. Hopefully, this study will help us come up with some answers for these people.”
Dr. Torres-Russotto, who is an associate professor in neurological sciences, said patients will be coming from Spain, England, Canada, Australia and the United States.
The International Orthostatic Tremor Meeting started Monday evening and will run through Friday. This marks the second time Omaha has hosted the event, with the previous Omaha meeting held in 2012. Last year, the meeting was held in Australia.
The patients participated in a two-hour physical examination by a movement disorder specialist and a physical therapist, as well as electrophysiological studies. The goal of the study will be to determine if the patients really do have postural instability and to assess the presence of ataxia, a neurological sign consisting of lack of voluntary coordination of muscle movements.
In addition to Dr. Torres-Russotto, the research team in neurological sciences includes: John Bertoni, M.D., Ph.D., professor, and Amy Hellman, M.D. and Danish Bhatti, M.D., both assistant professors.
Collaborators from UNMC’s hospital partner, The Nebraska Medical Center, include: Jen McKune, Lori Schmaderer and Katie Blacketer -- Physical Therapy Department; and Cindy Penke, Regan Iske and Bobbi Roeder – case managers in the Movement Disorders Department.
Dr. Torres-Russotto said participants in this year’s study will go through four new features:
An electroencephalogram (EEG) test, which records brain waves in an effort to determine the place in the brain that is causing the problems. Najib Murr, M.D., assistant professor, neurological sciences, will be performing and analyzing the EEG arm of the study.
They tested a smart phone app that can be used to diagnose the disease by measuring tremors in the legs.
They will receive specialized video analysis developed at Massachusetts Institute of Technology.
Received psychiatric assessment by a UNMC psychiatrist, Mark Fleisher, M.D., that will attempt to measure their level of suffering.
ORTHOSTATIC TREMOR NORD Research Grant
Frequently Asked Questions:• What is the NORD Research Grant Program?
NORD’s Research Grant Program provides seed grants to academic scientists for clinical studies related to development of potential new diagnostics or treatments for rare disease. In at least two cases, NORD grants have resulted ultimately in FDA-approved treatments for patients.• Where does the money come from?
Patient groups are responsible for raising the money. In the case of the Orthostatic Tremor Research Grant the money is from People with OT, friends and family. In the research grant that was awarded last year, there was a surprise donation awarded from Lundbeck Inc, in the form of a special grant.• How did the OT NORD fund start?
NORD created a program that would offload the extremely challenging aspects of handing the legal aspects, the paperwork and the administration of research grants. This created a very cost efficient path for rare disease groups to start something that would otherwise be impossible. At a small gathering of people with OT in 2008, several people volunteered to start the process of creating the Primary Orthostatic Tremor NORD Research Fund, and 8 years later the second research study is soon to begin. At the time of the meeting creating a research fund seemed impossible, it definitely surprised me! The failure would have been not to try. • Who chooses the research?
NORD's Medical Advisory Committee (composed of leading academic scientific experts) reviews all of the applications and selects finalists. The finalists are invited to submit a full grant application describing their proposed project in detail. NORD's Medical Advisory Committee then reviews the full grant applications (peer review) and ranks them through a scoring system. The highest scoring grant applications are recommended for funding to NORD's Board of Directors who votes on the final grant awards.• What can be expected from the research?
The only outcome with any certainty is to not try, to remain with the current knowledge of Orthostatic Tremor. The nature of research is that more is better, with each research study comes new knowledge, new paths to explore or simply knowing which to avoid.• When is the next Orthostatic Tremor grant awarded?
This is up to the OT community. The fund continues to grow but with a rare disease it is challenged by the smaller number of people interested. Once the fund reaches it’s goal the process of sending out “Requests for Proposals” (RFPs) begins. It is quite a miracle that a tiny group of people, friends and family has both started a fund and initiated real research. You can find more information about the prior OT research studies on the OT website and the forum posts updates on the amount in the fund on a regular basis.
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.