2019 year end letter

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2019 year end letter

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Below is the group email that was sent to all members:

Dear OT Friend:

Earlier this year we heard from a 43-year-old man with OT who described how he could no longer stand more than 30 seconds, saying that, “this disorder has cost me my career as a retail pharmacist, has cost me my family, and has robbed me of a good many physical abilities.”

Most of us have our own stories of loss due to OT. We can no longer hike or dance. Family, friends and colleagues do not always understand what we are experiencing. Cooking, arranging flowers, holding a baby, woodworking and a hundred other activities must be done sitting. Shopping and short walks are difficult, if not impossible.
But there is also much to hope for!

In Spain, Mike (one of our original OT group participants) is experimenting with oxygen therapy and reports amazing results! During three separate hospitalizations over the last several years, Mike has been given oxygen following surgery. Each time he has been on prolonged oxygen, his tremors have either disappeared or been reduced significantly, for as long as a week after discharge from hospital. This most recent time (November 2019), he left hospital with a prescription to continue using oxygen at home. Read his story and updates at viewtopic.php?p=6364#p6364

Research continues!

At the University of Nebraska Medical Center, Dr. Diego Torres-Russotto and his team continue to analyze data from our 2017 Phase III clinical study, extracting information that will inform the next level of clinical studies in 2020 or 2021. The Orthostatic Tremor Education and Research Fund at the University of Nebraska Foundation will support Phase IV Research when we gather again in Omaha to continue our participation in the quest to better understand and treat OT!
Graham and Ann have generously offered a fundraising challenge to all of us: they will match the Orthostatic Tremor Education and Research Fund at the University of Nebraska Foundation at the end of this year, up to $10,000. Currently, this fund stands at $7,355. With your help between now and December 30th, we can reach $10,000 and beyond and realize the additional gift of the Frasers’ $10,000 match! Thank you, Ann and Graham!

Dr. Torres-Russotto has reported the following:

Drs. Whitney, Bhatti and Torres published a paper at the Current Treatment Options in Neurology journal called "Orthostatic Tremor: Pathophysiology Guiding Treatment", as a guide for practitioners to be able to understand how this condition works and the treatment options available.

A keystone paper from our project was published as well, containing the most extensive, and the only blinded assessment of balance in OT (Comprehensive, blinded assessment of balance in orthostatic tremor.) The idea of this paper was to measure the severity of the imbalance and describe it.

Our latest update is that the paper called "Anxiety spectrum disorders are common in patients with orthostatic tremor" has been recently published. The importance of this paper is that it shows, for the first time, how much OT affects our patients, and how it produces significant anxiety which can alter their quality of life.

The team continues to analyze the data, and has about six more papers in the works. Thanks to the generous support of donors from the past, we have finally been able to hire a research assistant to be in charge of our large and complex database. This will allow for faster data analysis and the advancement of what we do. Our research assistant will work on the online survey right away. Those interested in participating in the online survey will be contacted soon so that you can complete it before the end of the year.

Our next step is to start working on two fronts: the Genetics of OT, and treatment options. Any treatment clinical trials have been delayed until the International collaboration that is producing the OT Scale completes its validation, a key requirement for clinical trials of possible treatments. The Genetics of OT study is on-hold until we get enough money to run it. We hope to either get grants or donations to be able to organize another meeting by 2021.

At NORD (National Organization of Rare Disorders), we have raised over $42,000, most of which will be awarded to one of up to ten applicants who have submitted OT-related research proposals currently under review by NORD’s Medical Advisory Committee. Proposals to study OT have come from physicians and researchers in North America, Europe and Africa, emphasizing that OT is an international concern. The award(s) for the NORD grant will be announced in 2020.
Dr. Aparna Wagle-Shukla, who conducted research two years ago at the University of Florida, funded by a NORD grant, has submitted her final scientific and financial reports which have been approved and final payment has been issued. Because her research has not yet been published, the data still are confidential, but Dr. Wagle-Shukla did provide the following non-confidential update, which can be shared: The pathology of orthostatic tremor resides in the cerebellum. Our study findings suggest that modulation of cerebellar excitability with magnetic stimulation is a promising approach to treat orthostatic tremor symptoms.

The OT Survey Team issued a questionnaire in May on Symptoms & Diagnosis of Orthostatic Tremor. They received an overwhelming response and have been working diligently since then to compile the data. Results will be posted at https://www.orthostatictremor.org/ in December.

Our financial support has resulted in research and progress, has narrowed the field of questions and continues to pursue treatment and cure!

The OT Forum at https://www.orthostatictremor.org/phpBB3/ is full of real stories from real people from all over the world who have OT, with encouraging reports and information about how we all cope with not being able to stand! Check it out! We are not alone.

In the meantime, as we work to raise money for continuing research, some of our OT families are exploring the options of Legacy Giving, where they would name one or both OT research funds in their will or other estate plans.
This can be as simple as adding the language, “I bequeath (a percentage or a specific sum) from my (will, trust or estate) to (name of organization) to support OT Research.” Please consult your legal, tax or financial advisor about opportunities that best suit your personal circumstances. No gift is too large or too small!
The Orthostatic Tremor Research and Education Fund is administered by the University of Nebraska Foundation and is dedicated to the research and education of OT, led by Dr. Diego Torres-Russotto. You may donate online at https://nufoundation.org/fund/01130710/ or mail to University of Nebraska Foundation, PO Box 82555, Lincoln, NE 68501-2555. Be sure to indicate that your gift is for the Orthostatic Tremor Research and Education Fund #01130710. Anyone making a gift should use the full name and number.

You may also donate to NORD online via the https://www.orthostatictremor.org/ot-research.html site or NORD’s own website, rarediseases.org and specify OT Research Fund, or by US Mail to NORD, 55 Kenosia Ave, Danbury, CT 06810. Please indicate that your gift is for OT Research.
Donations to both organizations are fully tax deductible when gifts are made by US donors who itemize their tax returns.

This is how we stand up to OT!

Warmest wishes for a safe and happy holiday season,

Gloria, Peggy, Helen, Maggie, Pat, Betty, Myrna, Lori, Patty, Mike, Stella, Rosemary, Rita, Cindy, Morris, Beth, Chris, Harriet, Lanita, Lydia, Mary, Nina, Sandy, Wini, Janet, Sheila and Mary Ann and all of the growing OT Family.
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Re: 2019 year end letter

Post by Peter »

I would like to participate in the 2019 online survey if you would please be kind enough to include me.
Many thanks
Peter Motson. UK.
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: 2019 year end letter

Post by admin »

Hi Peter

Thanks for the response, the online survey is now closed and the survey team is presently collating all of the responses.

all the best, and Happy Holidays
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