March is National Essential Tremor Awareness Month
Most anyone who lives with essential tremor (ET), or loves someone who does, has spent precious energy trying to explain the condition to others — and searching for answers themselves. That’s why raising awareness for ET is at the core of what we do.
March is National Essential Tremor Awareness Month, a time to work together to increase acceptance and understanding of ET. Our 2023 theme is “We Can Weather ET Together.”
As part of our annual campaign, we have created some special promotional items for those who make a donation. When you give $30 or more, we’ll thank you with an IETF phone/tablet holder. For a donation of $50 or more, we’ll send you a phone/tablet holder plus an NETA Month umbrella to show our gratitude.
Your ongoing generosity today will help more individuals find answers and belonging within a supportive community.
Learn more about ways to get involved in NETA Month, including how to order our FREE awareness posters, by visiting our awareness page online.
Long-Term Impact of Focused Ultrasound on Essential Tremor
Four to five years after undergoing focused ultrasound (FUS) to treat their essential tremor, patients are continuing to endure benefits. In our latest Talking Essential Tremor podcast, Dr. Rees Cosgrove, director of epilepsy and functional neurosurgery at the Brigham and Women’s Hospital in Boston, talks about the study and the enhancements made to FUS.
“There is clear evidence that focused ultrasound thalamotomy for ET has enduring benefits and long-term effects,” Dr. Cosgrove said.
He called FUS “no touch brain surgery” because it uses sound waves guided by MRI to treat deep in the brain with no incisions or permanent implants. The FDA recently approved the treatment of both sides of the body in patients with essential tremor. The new approval allows patients to have their second side treated at least nine months after treatment of their first side.
Listen to “Long-Term Impact of Focused Ultrasound on Essential Tremor” from our website or access it on Amazon Music/Audible, Deezer, iHeartRadio, Spotify, RadioPublic, and other podcast platforms.
Research Grant Update/Results
The IETF is accepting letters of intent for 2024 Research Grants. Proposals must focus on studies achieving one or more of the following goals:
- A better understanding of the etiology of ET.
- A better understanding of the underlying pathophysiology of ET, including independent validation of previous findings.
- Development or further validation of animal models of ET.
- Other approaches furthering the understanding of ET, which in turn would lead to enhanced treatment options for patients.
Researchers, clinicians and post-doctoral students in the U.S. and non-U.S. academic or private settings are eligible to apply. Letters of intent are due May 1, 2023. Learn more online.
Read the progress report from our 2022 research grant recipient and all other funded research articles on our website.
Clinical Trials Need You!
If you want to make a difference in the search for better treatments for essential tremor, 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:
· 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.
· 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.
I am a 85 year young patient of ET. I have just received my entry into the Cala TAPS Therapy. My ET started in 2017 and has been progressively increasing and the answer was not found in medicine! can’t wait to start being a poster man for some of the older generation.
please explain holmes rubal … got it after fus… not mad just frustrated
I had MRI guided Focused Ultra sound in September of 2017. For 2 years it was perfect. Then the tremor started to come back in my right hand which had been treated at Columbia Pres. in NY. I saw a neurologist recently here in Denver, Dr. Miam, hoping to have my left hand treated. He said that I at 89 was too old. I was very disappointed.