Tremor Gram – March 2024

Posted on March 6, 2024

March is National Essential Tremor Awareness Month

It’s time to take the mystery out of essential tremor (ET) by raising awareness! March is National Essential Tremor Awareness Month (NETA). Each year, the International Essential Tremor Foundation (IETF) hosts a special campaign with the goal of achieving greater understanding and acceptance of ET. Our 2024 theme is, “Let’s Take the Mystery Out of ET.”

Visit our ET Awareness page on our website for a list of ways you can get involved. They range from displaying our FREE ET Awareness posters (available for order online) to sharing our daily “ET Facts” social media posts from Facebook, Instagram and X (formerly known as Twitter). Or visit our YouTube channel and share some of our videos to show others what ET looks like and the impact it has on everyday life.

Also, please consider a NETA gift to the IETF. A monetary donation allows us to continue our important mission – to provide hope to the ET community worldwide through awareness, education, support and research. If you’re able to give just $30, we’ll thank you with a NETA mouse pad. With a donation of $50 or more, you’ll receive the mouse pad, and a NETA wireless charging pad (see photo).

Educating just one person can make a difference in helping us “Take the Mystery Out of ET!”

Facts about the VILIM Ball

In our latest Talking Essential Tremor podcast we’re sharing “Facts about the VILIM Ball.”

VILIM ball is a handheld mechanical therapeutic device that provides neuromodulation therapy to temporarily reduce hand tremor for patients with essential tremor (ET) and Parkinson’s disease. The ball contains sensors that monitor a person’s tremor level and personalize vibrational therapy to maximize treatment effectiveness.

Talking-Essential-Tremor-Podcast-Art-Square

Our conversation is with Dr. Mantas Venslauskas, CEO of the Lithuanian-based company Vilimed and creator of the device. Dr. Venslauskas grew up in Lithuania and witnessed friends and family members (including his grandfather) struggling with crippling illnesses. He wanted to help. With a PhD in mechanical engineering, he began working on devices that would improve health and improve quality of life.

The VILIM ball was created in 2017 and first became available for purchase in European countries in 2018. Then due to the COVID outbreak and a shortage of microchips, it wasn’t made widely available in the United States and other countries until this past year.

In the podcast, Dr. Venslauskas talks about how VILIM works, how it was tested and the company’s money-back guarantee. He also warns against less expensive imitations, which may not be created with safe vibration.

Advancing Ulixacaltamide for Essential Tremor

Praxis Precision Medicines is recruiting participants for a research study evaluating an investigational drug for essential tremor (ET).

This informational video, “Advancing Ulixacaltamide for Essential Tremor” shares the mission of Praxis and background on the development of ulixacaltamide, including results from the first two research studies. Ulixacaltamide was developed specifically for treating ET. It works by blocking T-type calcium channels in certain parts of the brain to help stop tremors and improve function.

Praxis’ current research study is a phase 3 study, called Essential3. It is an at-home research study evaluating ulixacaltamide to see if it may improve patients’ ability to complete everyday tasks, such as eating, drinking and dressing. The study has been designed so participants may take part from the comfort of their own home.

The International Essential Tremor Foundation (IETF) collaborates with biopharmaceutical companies like Praxis to help accelerate the development and delivery of new patient treatments for ET. We do this through education and awareness of their efforts, and by assisting with recruitment for clinical studies.

Applications Being Accepted for 2024 Scholarships

Are you a college student who has essential tremor (ET)? Check out the scholarship opportunity the International Essential Tremor Foundation (IETF) offers.

graduates at night

Each year, we award up to six scholarships to current or college-bound students who have been diagnosed with ET through the Catherine Rice Scholarship program. The $3,000 scholarships help support these students with their higher education goals. The deadline for fall scholarship applications is May 1, 2024.

Scholarships are awarded based on academic success, community service, leadership skills and an essay submission. Applications and more details are available on the IETF website.

If you are the parent or grandparent of a college student who may qualify, help spread the word!

Categories: Tremor Gram

4 thoughts on “Tremor Gram – March 2024

  1. I want to experiment VILIM Ball. IETF has informations about how effective it works? People’s testimony?

    1. It looks like you are a member of the Essential Tremor Awareness Group on Facebook. There have been numerous posts on that page about the VILIM ball from people who have tried it. That page is https://www.facebook.com/groups/5884699022/. To search for past topics, go to the top right hand side of the page to the picture that looks like a magnifying glass (next to the three dots) and click on that to key in a search topic. You will see several conversations pop up.

  2. There should be a discussion group somewhere on the web for those of us who shake too much to access Facebook or similar nonsense. We are the people who are heartily sick of being told the equivalent of, “why don’t you use your phone, are you some sort of cripple or something?” There are plenty of us, so please be respectful when confronted.

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