Tremor Gram – July 2023

Resources for Managing ET

Essential tremor (ET) can turn daily tasks into a test of ingenuity, perseverance and self-esteem. Basic everyday functions, such as eating, dressing and writing, can cause frustration and lead to stress which often temporarily increases tremor.

The IETF has put together a list of tried therapies, techniques and assistive devices to share with the ET community. They are posted under “resources” on the IETF website. The list includes orthotics, cooking and eating utensils, clothing, technical resources and more. Some may be familiar to you, and others may be new. Since every person’s ET is individual to them, what works or helps one person, may not necessarily help another. But many are worth a try.

If you have other coping tips or devices you have tried, feel free to share them in the “leave a reply” section.

Seeking Solutions Together

Making life better for people who have essential tremor (ET) is at the core of the IETF’s mission. We provide support, education and awareness every day. But most importantly, we invest in research to find answers that will lead us to a future where we can leave essential tremor behind.

If you want to play a role in advancing research for ET, donate to the IETF Research Fund. Your support enables us to fund research addressing the etiology and underlying pathophysiology of ET. To date, generous donors have helped the IETF contribute more than $975,000 to ET research. 100% of your contribution today will go toward these and other research efforts.

Effective treatments and a cure are out there. And by seeking solutions together, we can move closer to discovering them.

Thank you for your support and commitment to ET research.

ET’s Impact on Children

Many people see essential tremor (ET) as a condition of the middle aged and elderly, but that’s not entirely true. ET affects children as well. An estimated 5 percent of patients with ET present with symptoms before adulthood. In fact, in some studies at movement disorder referral centers, up to 20 percent of patients with ET reported their condition began in their pediatric years.

Dr. Keith Coffman, director of the movement disorders clinic at Children’s Mercy Hospital in Kansas City, provides many facts about pediatric ET in this video presentation, “Essential Tremor: Pediatric Onset.”

He said 60-80 percent of children with ET have a family history, and the presentation of ET in children is different than that in adults. Most children with ET have hand and arm tremor, and very little head or voice tremor.

The IETF has resources for parents of children with ET. Go online to read “Children with Essential Tremor: A Guide for Parents and Other Caring Adults.”

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:

·        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.

·        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.