Tremor Gram – July 2020

Posted on July 9, 2020

1,800 Respond to Our ET Education Survey

Thank you to everyone who completed our 2020 ET Education Survey online. We created the survey to gather feedback on our education events for the remainder of the year. Because of the Coronavirus pandemic, we are looking for ways to continue to do outreach while keeping people safe and connected. 

survey clip art

We received 1,800 responses to the survey. We will take this feedback into account as we move ahead with planning for the fall. 

Here’s an overview of the responses: 

Q: If the IETF were to hold in-person ET education events in 2020 would you attend?
21% – Yes
35% – Yes, but only if social distancing practices were in place
42% – No 

Q: Would you participate in virtual ET education events (Zoom) if they were offered?
52% – Yes
11% – No
36% – Yes, but I would prefer to listen to a recording, rather than tune in live. 

Q: If the IETF offered podcast interviews on a variety of ET topics, would you listen to the podcasts?
76% – Yes
24% – No

Q: What topics would be of interest to you for our education events and podcasts?
1,300 responses were received. Ideas included: how to cope with ET, latest treatments and tools, occupational therapy, new medications, ET in youth, natural way to lessen tremors, impact of CBD, DBS, focused ultrasound and many more. 

Thanks again to everyone who participated in the survey. Watch for announcements on our upcoming education and outreach programs. 

Clinical Trial Under Way to Evaluate an Investigational Drug for ET

There is a new clinical research study taking place to evaluate the safety and effectiveness of an investigational drug in individuals diagnosed with essential tremor. 

Like all clinical trials for ET, we have posted the information on our website. It includes study details, eligibility criteria and a website link where you can gather more information.

Announcing Our Fall Scholarship Recipients

graduation photo

The IETF is pleased to continue its support of youth with essential tremor through its Catherine Rice Scholarship Program. We received some impressive applications for fall 2020 scholarships, giving our scholarship committee a challenge to select just four. After much consideration the committee chose the following students for $1,000 scholarship awards: 

Terrin Griffeth, Brigham Young University – Idaho
Terrin has experienced the judgment of others because of his essential tremor – including people poking fun at him because he shakes. He said he came to realize that people laugh at that which they don’t understand or what makes them uncomfortable. Since that time he has made an effort to raise awareness about ET. 

Brandon Staple, University of Colorado, Denver
Brandon has been dyslexic all of his life and coupling this with his ET made him feel uncertain about his future. Through his hard work he became a highly-accomplished student and was one of 10 nationwide accepted into the BS/MD program at the University of Colorado School of Medicine. He plans to be a neuropsychologist. 

Elizabeth Carroll, University of Massachusetts, Amherst 
Elizabeth has been living with essential tremor (ET) for five years. When she was first diagnosed, she tried to hide it. But since that time she has learned to advocate for herself. Elizabeth is majoring in economics and legal studies. She aspires to work in public interest law to reduce disability-based employment discrimination. 

Madison Young, Arkansas Tech University, Searcy
Madison believes that having essential tremor gives her an advantage in the profession she is pursuing – physical therapy. It will help her reach others on a level that others cannot. “I want people with disabilities or disorders to know it doesn’t have to end their dreams,” she said. 

IETF scholarships are made possible through donations. If you would like to support our scholarship program, please  donate online.  

Categories: Tremor Gram

11 thoughts on “Tremor Gram – July 2020

  1. I am interested in what treatment is offered for a patient that has a pace maker in place that is non compatable when wanting to treat ET( eg)using an MRI

    1. Thank you for reaching out. It looks like you are interested in a surgical option for essential tremor. And you are very smart to do some background research in advance. We always suggest a conversation with your physician as they have your health background and can guide you on what might be a good fit for you. We do have a web page that provides information about surgical options and includes links to the main websites for these options. That would be your best resource for gathering background online. You can gather what you need through these sites and be prepared to visit with your doctor. Here is the link to our page: https://essentialtremor.org/resources/living-with-et/treatments/

  2. I am happy to hear the someone out there cares enough to have this brought to the fore front. I myself have Essential Tremors – Yes, but only if social distancing practices are in place.

  3. I, and maybe other “seniors”, might need info on how to access podcasts.

    Thank you.

    1. Thank you for this feedback! Yes, what we will do is post them on our website and then share the link with you. We’ll make it easy for you to access them. You won’t need a special app or anything. Stay tuned!

  4. I don’t recall filling out this survey! Being a senior, I am all for a ZOOM conference.

    Someone has a foundation for ET but as I looked, none of her fund go to IETF so I won’t give to it. Diann Shaddox foundation. Have you ever heard of her?
    http://www.diannshaddozfoudation.org

    1. Thank you for your feedback! We’re looking forward to connecting with more people in this way. . . Yes, we have heard of the Diann Shaddox Foundation. We don’t have a formal connection with them; we are a separate entity. The IETF has been around for more than 30 years and our focus is on research, education, support and advocacy around essential tremor — in the US and a more global scale. We always encourage donors to check out nonprofits they are considering supporting on GuideStar. GuideStar is a philanthropic research database designed to fill in the knowledge gaps you need to find the best charities to which to donate. We have had a GuideStar GOLD seal of transparency for many years and we are proud of this. Watch your email and our website for Zoom recordings in the near future!

  5. I welcomed the opportunity to have responded to the survey. Many thanks for asking for our opinions.

  6. I don’t recall completing your questionnaire…perhaps I just forgot, but I will fill out the info below.

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