NORD OT Research Update March 2016

Information about OT Research and how to donate towards OT Research.

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NORD OT Research Update March 2016

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NORD OT RESEARCH FUND GRANT AWARD HISTORY

We began our affiliation with NORD (National Organization of Rare Disorders) based in Connecticut, in 2008, establishing the OT Research Fund and sending on-line updates and appeal letters twice a year to everyone registered on the OT Resource web site. NORD requires its fund members (of which we are one) to raise a minimum of $35,000; NORD takes $3,000-$3,500 in admin fees, and makes grant awards to clinicians who submit proposals to their Medical Advisory Board. We have no input in this decision. But in return, donations made to the OT Research Fund are tax deductible under the NORD nonprofit umbrella. If, over the course of five years, a member’s fund does not reach $35,000, the monies revert to NORD.

In 2013, we reached over $40,000 in our OT Research Fund at NORD and two grants, of $20,000 each, were awarded to Dr. Sabine Meunier in Paris Looking at artificial TMS (trans magnetic) stimulation of the cerebellum and its effect on OT and Dr. Julian Rodriguez in Sydney, Australia, Pregabalin for the Treatment of Primary Orthostatic Tremor.

Dr. Sabine competed this phase of her research (see below), while Dr. Rodriguez was not able to get approvals to begin his study within the timeframe of the grant, resulting in his allocation of $20,000 reverting back to the OT Research Fund in 2014.

In 2014, the OT Research Fund received a gift of $10,000 from the Lundbeck Foundation bringing our total to $48,601. NORD then took an admin fee of $3,500 and awarded $30,000 in 2015 to Dr. Aparna Wagle Shukla for rTMS Therapy for Primary Orthostatic Tremor: A Novel Approach. Her research continues to move forward and an interim report is due now.

At present there is $17,404 in the NORD OT Research Fund.

Summary of Dr. Sabine Meunier’s report.
Sabine Meunier, MD, PhD, a neurologist and senior researcher at the Movement Disorders Clinic, Pitié-Salpêtrié Hospital, Paris, along with Drs. Cecile Gallea and Marie Vidailhet, conducted a pilot study to see whether artificial stimulation of the cerebellum could improve primary orthostatic tremor (POT).

Conclusions: Localized cerebellar atrophy and hypertrophy of the SMA (supplementary motor area) were found in POT patients in the present study and in patients with essential tremor in a previous study (Gallea et al 2015). This pattern could represent a “generic” signature of tremor.  Hypertrophy of the cerebellar vermis is specific to the POT patients and likely represents a compensatory response, opposing the postural instability caused by the lower limb tremor.

Five days of stimulation in nine POT patients (and nine non-POT volunteers) are able to induce functional changes (a decrease in the amplitude of the tremor as measured by electrodes) but not strong enough to translate into clinical improvement (the patients did not feel any change in their ability to stand). “We could try longer stimulation duration or target another brain area like the SMA (supplementary motor area),” in future studies, according to Dr. Meunier ,who would like to conduct a detailed MRI mapping of the resting state networks of the cerebellum in POT patients AND investigate the cognitive cerebellum resting state network, correlating it putative impairment with the performance of various cognitive tasks.

Respectfully submitted, Pat March 4, 2016
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Re: NORD OT Research Update March 2016

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An update has been posted for the clinical study** “rTMS Therapy for Primary Orthostatic Tremor”. The update mentions that the study is currently recruiting participants. For more information please see the link below:

http://bit.ly/rTMS_OT_clinicalStudy_update

For information on what is a Clinical Study and participation in a clinical study visit the link below:

http://bit.ly/clinicalStudies

**This clinical study was funded through the NORD Orthostatic Tremor research grant with contributions from the Orthostatic Tremor community in partnership with Lundbeck Inc.’s “Raise Your Hand to Fight Rare Diseases” campaign. Your help does make a difference! Together we can stand up to OT.
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