Tremor Gram – May 2024

Posted on May 8, 2024

IETF Website More Accessibility Friendly

The IETF website has been updated for better user accessibility. A program called AccessiBe has been added to enable users to customize their online preferences to meet their individual needs. This update is timely as May 16 is Global Accessibility Awareness Day (GAAD), a day that highlights digital access and inclusion for people with disabilities.

There are now several new website settings from which to choose, including:

Seizure Safe Profile – This profile enables epileptic and seizure prone users to browse safely by eliminating the risk of seizures that result from flashing or blinking animations and risky color combinations.

Vision Impaired Profile – This profile adjusts the website so that it is accessible to the majority of visual impairments such as degrading eyesight, tunnel vision, cataract, glaucoma and others.

ADHD Friendly Profile – This profile significantly reduces distractions to help people with ADHD and neurodevelopmental disorders browse, read and focus on the essential elements of the website more easily.

Cognitive Disability Profile – This profile provides various assistive features to help users with cognitive disabilities such as autism, dyslexia, CVA and others to focus on the essential elements of the website more easily.

Keyboard Navigation (Motor) – This profile enables motor-impaired persons to operate the website using the keyboard Tab, Shift+Tab and the Enter keys. Users can also use shortcuts such as “M” (menus), “H” (headings), “F” (forms), “B” (buttons), and “G” (graphics) to jump to specific elements.

Blinder Users (screen reader) – This profile adjusts the website to be compatible with screen-readers such as JAWS, NVDA, VoiceOver and TalkBack. A screen-reader is software that is installed on the blind user’s computer and smartphone, and websites should ensure compatibility with it.

Click on the inclusivity logo at the bottom right side of the website and choose from the settings to try them out.

Learn about Our Newest Research Grant Recipient

The IETF has awarded a 2024 research grant to the study, “Cerebellar Degeneration in Essential Tremor: Testing the Hypothesis.”

The study’s principal investigator is Holly Shill, MD, FAAN, Barrow Neurological Institute, Phoenix, AZ.  The goal of this project is to determine whether essential tremor (ET) is a neurodegenerative disease affecting the cerebellum.

A significant barrier in ET research and development of therapeutics has been the lack of good laboratory models to study ET. This is largely because there are no well-defined genetic changes nor clear changes seen within the brain itself which could be used to model ET in the lab.

For the past 15 years, there have been a number of research publications exploring the neuropathology of ET. Neuropathology means examining changes that are seen in the number of brain cells and their ability to maintain connections, most often studied at the microscopic level. Due to the progressive nature of ET combined with findings of unsteadiness and incoordination in advancing ET, the cerebellum has been a logical place to look for evidence of neurodegeneration as this is the area of the brain responsible for these symptoms. Cerebellar involvement in ET is supported by human studies of the metabolism and electrical activity in the brain with both types of studies showing overactivity of the cerebellum. Several research groups have looked at counting of cerebellar Purkinje cells and other changes in the cerebellum with conflicting results.

There is a need for additional studies to clarify cerebellar pathological findings in ET in order to support or refute the hypothesis that ET may be a neurodegenerative disorder of the cerebellum. This new study funded by the IETF will use enhanced methods to study findings in the human cerebellum. If the findings can be confirmed, it will open the potential to develop better models of ET as well as potential targets for treatment.

Watch for progress reports on this study and view all the IETF’s current and former research grant projects online.

Pay Tribute to Loved Ones with a Memorial Gift

Memorial Day is a federal holiday in the United States for honoring and mourning the U.S. military personnel who died while serving in the United States Armed Forces. Over the years, it also has become a day of remembrance of loved ones who have passed.

As Memorial Day approaches, consider honoring a loved one with a memorial contribution to the IETF. There is no set minimum contribution and all memorials are posted on the IETF website and in Tremor Talk magazine.

As with all donations to the IETF, memorial donations are tax-deductible.

Sign Up for a Clinical Trial

artwork for clinical trials

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:

  • The University of Texas Essential Vocal Tremor Treatment Study. 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 goal of this study is to develop a therapy that improves vocal control in speakers with tremor. Participants will complete hearing tests, cognitive tests, and voice recordings while they perform different speaking tasks. Participants will also receive 12 virtual voice therapy sessions. Nasolaryngoscopy will be performed.  Participation requires attending up to two in-person sessions in the UT Voice Lab in Austin, TX. For more information contact the UT Voice Lab, (512) 232-4428, or email voicelab@austin.utexas.edu.
  • 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.
Categories: Tremor Gram

6 thoughts on “Tremor Gram – May 2024

  1. I have had Dysphonia & Essential Head tremors for 16 years, there does not ever seem to be a clinical trial for HEAD tremors? why> I am 91 years old & they are getting progressively worse? Can you help me?Wilma L Greene

    1. A good website to check for research studies is http://www.clinicaltrials.gov. I just looked up head tremor and this is a study that was completed in 2022: https://www.clinicaltrials.gov/study/NCT02555982?cond=head%20tremor&rank=1. You’re right in that head tremor does not seem to draw as much attention from researchers. Here is another one that discusses the directionality of head tremors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4695227/.

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