The Orthostatic Tremor Forum (archive)

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 teams for evaluation. In June of 2012, 2 research grants were awarded from the NORD OT fund.

1) Title of Study: Is Cerebellum a Potential Therapeutic Target for Primary Orthostatic Tremor (POT)?

The following is a portion of the interim report submitted to NORD from the research project : Is Cerebellum a Potential Therapeutic Target for Primary Orthostatic Tremor – A Pilot Study. This study is still in progress.

“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, as a result of difficulties with the approval and application process, 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

Dear Advocates for and Friends of OT—

We are all in this together, trying to find answers, support each other, inform the public and encourage research so that OT can be better understood and eventually cured.

In Omaha at the University of Nebraska Medical Center, Dr. Diego Torres- Russotto is preparing to hold a second round of clinical trials in the spring of 2014 for adults 19 and older. The purpose is to understand the impairment of normal balance mechanisms and the balance disturbances in OT. More information about participating in the Omaha trials will be coming your way in 2014. Many of us who participated in October 2012, in the first round of clinical trials, plan to return to Omaha in the spring as this will also be our biennial OT meeting.

On the research front, under the NORD umbrella, Dr. Sabine Meunier’s pilot study in Paris is looking at artificial (TMS – trans magnetic) stimulation of the cerebellum and its effect on Orthostatic Tremor. Because of difficulties with the approval and application process, the 2nd research grant in Australia was not able to proceed within the terms of the original grant agreement. As a result the funds have been reinvested back into the OT Research Fund.

The good news is that we now have $28,346 in the OT Research Fund and NORD is waiving its administrative costs so 100% of your gift to OT, this year, will go toward the next OT research grant award!

When we have reached our goal of $35,000, NORD will again put out Requests for Proposals to the medical community and their Medical Advisory Board will award the grant money to the most promising proposal(s).

One of our OT Family, New Zealand sculptor Di Conway, offered one of her mounted bronze figures, Go With the Flow, as the centerpiece of a fund raiser for OT, culminating at the OT Meeting in Sydney last June. Di’s sculpture raised over $3,000 in support of the OT Research Fund.

As always, we rely on individual gifts from those of us who know, firsthand, that we need to stand up to OT!

So please, join us today and make your gift to support OT Research. You may make donations directly to the NORD Primary Orthostatic Tremor Fund, information available on the link below:

http://bit.ly/OTfundInfo

Please be sure to note that your gift is for Primary Orthostatic Tremor Research. The OT website includes instructions on how to donate that are especially relevant to non-U.S. residents as there have been changes in the way non-U.S. gifts are processed.

Thank you,
Gloria, Peggy, Helen, Maggie, Pat, Betty, Myrna, Lori, Patty, Mike, Stella, Rosemary, Rita, Cindy, Morris, Beth, Chris, Harriet, Lanita, Lydia, Mary, Richard, Sandy, Wini, Janet, Sheila and Mary Ann.