Tremor Gram – February 2024

Let’s Take the Mystery Out of ET

National Essential Tremor Awareness Month (NETA) begins March 1 and the International Essential Tremor Foundation (IETF) has posted several resources online to help you get involved.

Our 2024 theme is, “Let’s Take the Mystery Out of ET” which encourages spreading information to increase understanding. ET impacts 7 to 10 million people in the U.S., 1 million people in the U.K. and millions more worldwide. By increasing understanding, we can help erase the stigma associated with it.

Here are some ways you can help raise awareness:

  • Download our free Essential Tremor Facts sheet and share these facts with others to get conversations started about essential tremor.
  • Order free awareness posters and hang them in areas that get a lot of foot traffic, such as grocery stores, pharmacies, your doctor’s office, community or senior centers, local libraries, etc. (Limit 5 maximum)
  • Make an awareness donation. We’ll send you a NETA mouse pad with a $30 donation. For a $50 donation, you will receive a NETA wireless charging pad AND the NETA mouse pad (while supplies last).
  • Visit our YouTube Channel and share some of our videos, including the popular “Essential Tremor is More Than a Tremor” which has more than 602,000 views.
  • Share IETF’s daily social media posts and pages from the IETF website on your social media channels. Helping to educate your friends and family is as easy as clicking “share.”
  • Use our digital downloads to show your support for the IETF and ET awareness on your emails, Zoom calls, and social media posts.

2024 marks the 14th year the IETF has hosted NETA Month. Learn more about the history of this important awareness program online.

New Children’s Book Features a Boy with ET

It’s not well known, but essential tremor (ET) can be diagnosed in children as well as adults. In fact, it is estimated that about five percent of patients with ET will present with symptoms before adulthood. For this age group, it interferes with play (using blocks or Legos, putting together puzzles), drawing and writing in school. The frustration and social embarrassment for children can lead to anxiety and social isolation.

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“Shaky Quaky Jake” is a new children’s book that shines a light on ET in children. Author Kelly Roberts shares how the book came about in our latest Talking Essential Tremor podcast – “’Shaky Quaky Jake’ Shines a Light on ET in Children.”

The main character in the book is a little boy named Jake who is struggling with his essential tremor. He has trouble holding the scissors when working on a school project, and he spills glue on his shirt. His Gramma tells him everyone struggles with something. “You’re one of a kind,” she says.

After listening to the podcast, visit the author’s website for activities highlighting diversity and respect, www.kellydroberts.com.

Abbott Launches World’s Smallest Rechargeable System to Treat Movement Disorders

Abbott has received approval from the U.S. Food and Drug Administration (FDA) to launch the Liberta RC™ DBS system, the world’s smallest rechargeable deep brain stimulation (DBS) device with remote programming, to treat people living with movement disorders. The Liberta RC DBS system also requires the fewest recharges of any FDA-approved DBS system, needing only 10 recharge sessions a year for most people.

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Communication between people and their doctors is critical to ensuring exceptional care, especially for those who suffer from chronic conditions, such as Parkinson’s disease and essential tremor, that can be treated with deep brain stimulation therapy. The Liberta RC DBS system is the only rechargeable DBS device compatible with Abbott’s proprietary NeuroSphere™ Virtual Clinic, a first-of-its-kind connected care technology in the U.S. that allows people to communicate with their doctors, ensure proper settings and functionality, and receive new treatment settings remotely as needed without stepping foot in a doctor’s office. Abbott developed NeuroSphere Virtual Clinic after research showed that the average Abbott DBS user in the U.S. must travel more than 150 miles to access a movement disorder specialist.

“When our patients choose a rechargeable DBS system, it is often based on the smaller size of the device, but the tradeoff has always been how recharge frequency affects their lifestyle,” said Dr. Paul Larson, professor of neurosurgery at the University of Arizona. “The Liberta RC DBS system excels in both areas, as a compact rechargeable device with the lowest recharge requirement of any FDA-approved DBS system. This achievement, coupled with the integration of remote programming capabilities, is a significant advancement for patients.”

At approximately the height and width of a smartwatch face, the Liberta RC DBS system is about 31% smaller than other commonly used implantable, rechargeable DBS devices currently available in the U.S. When used under standard settings, Abbott’s Liberta RC DBS system needs to be recharged as few as every 37 days – or 10 times a year – using a wireless charger that is placed over the device. For users who prefer a weekly charging schedule, only 30 minutes of charging is needed. The wireless charging system allows people to be active while wearing it and can fully recharge the Liberta RC DBS system twice before needing to be plugged in again. The system, which can be controlled on an Abbott supplied patient controller or a compatible and secure iOS device, offers users helpful notifications and customizable settings for a personalized charging experience.

Learn more online.

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.

artwork for clinical trials

Here are some of the most recent ones:

  • Praxis Precision Medicines Essential3 At-Home Phase 3 Research Study in Essential Tremor. 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 see if you qualify, visit www.essential3study.com.
  • Researchers in the Voice Lab at The University of Texas at Austin invite individuals with essential tremor to participate in a study of voice. The goals of the study are to understand how speakers control their voice and to develop therapy that improves vocal control. For more information contact the UT Voice Lab, (512) 232-4428, or email voicelab@austin.utexas.edu.
  • The University of Texas Health Science Center at Houston is recruiting patients for a study to help boost the understanding of deep brain stimulation (DBS) for essential tremor. Led by Dr. Albert Fenoy, associate professor of neurosurgery at McGovern Medical School at UTHealth. With DBS, electrical stimulation is delivered to the brain through an electrode implanted deep into the VIM nucleus of the thalamus. The implanted electrode is connected to a neurostimulator which provides the appropriate amount of electrical stimulation to control tremor. However, over time its effectiveness can decrease due to ET progression. So the volume can be adjusted to compensate, but can lead to side effects such as worsening of balance, or ataxia in up to 20 percent of patients. This study will seek to discover if the stimulation is modulating something in the cerebellum which is causing this. A total of 72 patients are being recruited for the study. Each will undergo DBS for essential tremor and will be followed for two years. Learn more online.
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