Tremor Gram – December 2023

Your Generosity Improves Lives

Providing hope to the essential tremor (ET) community is the goal of the International Essential Tremor Foundation (IETF). We do this by funding cutting-edge research, awarding scholarships to students with ET, hosting support groups around the world and raising awareness all year long.

As 2023 comes to a close, we are reflecting on the generosity and kindness of you, our donors. The IETF exists to support you, but would not exist without your wonderful support.

Please consider a tax-deductible, year-end gift today. Your generosity means a great deal to our organization and those who turn to us for hope, answers and community. A gift in any amount will make a difference and enable us to continue the work we do in 2024.

We want every person living with ET to feel supported and understood. Thank you for helping to make this possible.

From the Board and staff of the IETF, we wish you a joyous holiday season and happy, healthy new year!

Assistive Technology Centers Provide Support for ET Patients

There are a number of assistive devices on the market that can make life a little more manageable for people with essential tremor (ET). But which devices are best? And how do they work?

Talking-Essential-Tremor-Podcast-Logo

A great resource for people looking for information and support in this area is the National Assistive Technology Act Technical Assistance and Training Center. In 1988, legislation was passed to help increase awareness, access and acquisitionof assistive technology. Called the Assistive Technology Act, it supports State Assistive Technology (AT) Programs and Protection and Advocacy AT Programs.

You can learn more by listening to our latest Talking Essential Tremor podcast, “Using Assistive Technology Centers for ET Support.”

David Baker, director, Missouri Assistive Technology, talks about the services U.S. assistive technology centers provide in each state. These serves include assistive device demonstrations and loans.

AT centers are for individuals of any age and with any type of disability, functional limitation or chronic condition. Find one in your area at www.at3center.net/stateprogram.

Remove the Stress from Holiday Travel
The holidays are near and that means many people will be traveling to be with family and friends in the coming weeks. However, getting through airport security can be worrisome for someone living with essential tremor (ET). Below are tips to make your travel more fun and less stressful.

Airport Congestion Photo
  • Give yourself plenty of time to arrive so you don’t rush through security. Stress can exacerbate your tremor.
  • When packing medications, the Transportation Security Administration (TSA) allows larger amounts of medically necessary liquids, gels, and aerosols in reasonable quantities for your trip, but you must declare them to TSA officers at the checkpoint for inspection.
  • What items can you carry on? Check this online list in advance.
  • Be prepared to empty your pockets of loose change, keys and your cell phone. Carry as little in your pockets as possible.
  • Have your ID and travel documents in your hand.
  • Consider carrying a medical card to discreetly communicate about special needs to security officers. The TSA has a notification card available for free download at www.tsa.gov. You can create a personalized ET medical alert card through the IETF website.
  • For airport wheelchair service, please contact your airline directly. (TSA does not provide this service.)
  • If you have other questions or concerns about traveling with a disability please contact passenger support.

You can talk to a representative through TSA Cares, a toll-free hotline at 1.855.787.2227, to get more information about screening that is relevant to your specific disability or condition.

Sign Up for a Clinical Trial

If you want to make a difference in the search for better treatments for essential tremor (ET), consider participating in a clinical trial. On our website, we keep an ongoing list of clinical trials recruiting participants.

Here are some of the most recent ones:

artwork for clinical trials

·        Jazz Pharmaceuticals EveresT Study is a research study testing the safety and effectiveness of an investigational medication that may help decrease tremor severity for people diagnosed with essential tremor (ET). To learn more and sign up for the study, please visit the study website here.

·       The KINETIC 2 TRIAL is evaluating the safety and efficacy of three different doses of an investigational drug compared to a placebo on reducing tremors in adults diagnosed with essential tremor. Participation lasts approximately 19 weeks. Visit the study website at KINETIC2ETtrial.com to learn more.

·        The Essential3 study is an at-home research study evaluating an investigational drug, to see if it may improve your ability to complete everyday tasks, such as eating, drinking and dressing. The Essential3 study has been designed so that you may participate from the comfort of your own home. There is no travel or trips to the doctor’s office required. If you would like to learn more about this study and to see if you qualify, please visit Essential3study.com  

Categories: Tremor Gram

9 thoughts on “Tremor Gram – December 2023

  1. I have been diagnosed with Essential Tremor by a Movement Disorder Neurologist ay Columbia Hospital and also at NYU hospital in New York City approximately 12 years ago. I am on medication for it. 914-261-3900. I live in Delray Beach Florida

  2. I was diagnosed with ET 10 + years ago. My symptoms are mild and can be controlled with medication and the Cala Trio bracelet. My problem is Cala Trio’s ability to supply the new bands every three months, which they have in the past. I am now overdue for a new band by 2 months and Cala Trio keeps telling me there’s a supply issue. My question is to anyone, is there another manufacture that make a bracelet similar to the Cala Trio? I really want to continue with this type of therapy rather than increase my medication. Thank you.
    Dianne Tucker
    316-650-7315

    1. We reached out to Cala and they confirmed that some of their Cala Trio band sizes are affected by supplier delays. They said they hope to clear this up in the coming weeks. There are a couple of other devices similar to Cala Trio (now called Cala klQ) that are in clinical trials right now, but none are yet available for purchase yet. We do have a list of assistive devices and therapies posted on our website, https://essentialtremor.org/resource/assistive-devices/. I know how frustrating this must be for you to finally find something that helps you and then to not have it unavailable to you temporarily.

    1. We have an awareness page on our website that can give you some ideas. Each March, we work to raise awareness by hosting National ET Awareness Month (NETA). We create a theme around the month and create some graphics and special posters that can be shared. Our 2023 NETA Month information is still online but we will be updating it after the first of the year with a new 2024 theme and art. This page has some suggestions on ways to be an advocate by raising awareness. https://essentialtremor.org/what-we-do/et-awareness/

    1. Which device are you referring to? Is it the Cala kIQ? If this is the device about which you are asking, the answer is no.

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