Tremor Gram – August 2020

Posted on August 5, 2020

Help Us Raise the Curtain on ET Research

One of the most important parts of the IETF’s mission is our work around research. We know research is what allows us to move forward with better treatments and management techniques for essential tremor.

research-appeal-logo-2020

Each year, we award grants to researchers who submit proposals for projects that address the nosology, etiology, pathogenesis, treatment and other topics relevant to essential tremor. To date, we have awarded $900,000 to research studies.

But none is this is possible without your help. We need your support for this important funding.

In July, we mailed a letter and donation card to our essential tremor community asking for support for our 2021 research grants. We appreciate all those who have responded. If you did not receive a letter, you can make a donation online. ALL donation dollars received go directly to these grants.

We are excited about the new possibilities for essential tremor research, and we will continue to explore new ways to encourage and support it.

Virtual Education Events

Thank you to the more than 1,800 people who responded to our “ET Education Survey” last month. We developed the survey to solicit feedback on the direction of our ET education events in light of the COVID-19 pandemic. (You can read an overview of the survey results online.)

Based on your feedback, we have moved forward with creating ET Virtual Education Events. Our first two-part event is available now. It focuses on Diagnosis & Treatment Options for Essential Tremor.

In Part I, Dr. Avram Fraint, neurologist with Northwestern Medicine, Chicago, discusses the pathogenesis of essential tremor, genetic factors, diagnostic techniques and non-surgical treatment. 

Part II focuses on surgical options for ET, presented by Dr. Leonard Verhagen, professor of the Department of Neurological Sciences at Rush University Medical Center in Chicago.

Both videos are packed with valuable information. We are grateful to these physicians for the time they took to share their presentations, and for their dedication to the ET community.

Thank you to our corporate partners for our ET Virtual Education Events: Medtronic, Insightec, Abbott and Sage Therapeutics. Keep an eye on our website for more Virtual Education Events coming soon. 

Research Studies Looking for Participants

The IETF is proud to partner with Dr. Elan Louis and his colleagues at UT Southwestern Medical Center to promote groundbreaking research happening in the area of essential tremor. Participants are now being recruited for several research studies. They include:

Study of Cognition in Essential Tremor. This study is tracking cognitive changes in individuals with ET.

Risk Factors Underlying Essential Tremor. This study is tracking the environmental causes associated with movement disorders such as ET and Parkinson’s disease (PD). Participants must NOT have a medical history of Parkinson’s disease or dystonia. This NIH-funded study is recruiting participants in the Dallas-Fort Worth area.

Risk Factors Underlying Essential Tremor (for those with a history of PD). This research study is tracking the environmental causes associated with movement disorders such as ET and Parkinson’s disease (PD). This NIH-funded study is recruiting participants in the Dallas-Fort Worth area.

More details on these and other research studies are available on the IETF website.

Categories: Tremor Gram

6 thoughts on “Tremor Gram – August 2020

  1. Do you do any research on people with orthostatic tremor? If so, I would be glad to participate in a study or clinical trial. Thank you.

    1. The IETF has not provided research grants for any studies on orthostatic tremor and we don’t currently have information on any that are taking place. Keep an eye on https://www.clinicaltrials.gov/ which is a comprehensive website of clinical trials. It is managed by the National Institutes of Health. A quick search showed some information a clinical trial that completed in 2019 and another whose status is “unknown.”

  2. I reside in Ireland..have ET and dystonia. On botox injections which helps a little..are there any new meds to control this awful tremor? Would appreciate any info.

    1. Louise, we’re sorry for your struggles. Please know you are not alone. Phase 2 of a research study is taking place now for a new medication for ET. Sage Therapeutics is administering it. As you know, studies take some time to complete and typically there are several different trials that need to take place before a new medication is approved by the FDA, if it is proven to be effective. You can learn more about this clinical trial by visiting our website. It’s called the Kinetic Trial or “A Phase 2, Double-Blind, Placebo-Controlled, Randomized Study Evaluating the Efficacy, Safety, and Tolerability of an Investigational Drug in the Treatment of Individuals with Essential Tremor.” https://essentialtremor.org/what-we-do/research/research-recruitment/

  3. I recently heard that B Complex would be good for essential tremors since it is a vitamin for the brain. I had not heard this before. I wonder what your thinking is on this. Have there been any studies on it?
    E-Mail: reneelgardner@wowway.com

    1. The relationship between tremors and vitamin B has come up before. It’s because a severe lack of vitamin B-12 in the human body can cause shakiness and tremor. We always tell individuals that if they take B-12 and their shakiness stops, then they were more than likely deficient in B-12. Dr. Dan Sperling wrote an article talking about some studies done in this area. He makes some good points. https://essentialtremortreatment.com/2-vitamin-studies-shed-light-essential-tremor-nutrition/

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