Tremor Gram – September 2023

New ET Support Groups Formed

The IETF is excited to announce its newest Essential Tremor Support Groups! They are:

• New Orleans, LA ET Support Group, led by Terri Wakefield
• Birmingham, AL ET Support group, led by Eleonor Moore
• Bonsall, CA ET Support Group, led by Leslie Schumann
• Napanee, Ontario ET Support Group, led by Gene Graham

An ET Support Group is an informal, self-managed, self-help group run by and for people with ET. They bring people with essential tremor together in a caring environment to share stories, learn about management techniques and connect as a small ET community. Meeting times and places are decided by each group. Some groups meet monthly, others bi-monthly or even quarterly.

Find a group in your area on our website. If you don’t see one near you, consider starting one. The IETF provides training manuals and support. Express your interest by completing our online application. 

If you are on Facebook, consider joining the Essential Tremor Awareness Group, an online support group where members post questions, concerns, share tips and become an online support system for others with ET. To join the group, make a request at https://www.facebook.com/groups/5884699022/.  

Download Our ET Coping Tips Handout

Essential tremor can turn daily tasks into a test of ingenuity, perseverance and self-esteem. Dressing, eating, applying makeup, brushing your teeth – all of these things can lead to frustration and anxiety, and also increased tremor.

The IETF has compiled a list of everyday coping tips, many of which have been shared by those in the ET community. It includes general suggestions as well as suggestions for writing, eating/drinking, food preparation, using technology, airport security and more.

You can download it free from our website. 

Help Blaze the Trail

Do you ever wonder if there’s a way to make more of an impact for people living with essential tremor (ET)? Something that’s quick and simple for you, but will make a big difference for the ET community?

Consider joining the ET Trailblazers by becoming a monthly donor to the IETF. As a Trailblazer, you’ll help break new ground in ET research, awareness and support and allow us to respond quickly to new research opportunities. Your recurring monthly gift is simple to set up and will play a vital role in the effort to find answers and ultimately a cure for ET.

As an ET Trailblazer, you will:

• Make a significant collective impact, along with fellow Trailblazers, every month
• Enjoy the ease and convenience of supporting the ET community with an automated monthly gift in the amount of your choice
• Receive Tremor Talk magazine and a gift subscription for a friend

Visit www.essentiatremor.org/jointrailblazers to sign up or contact us at info@essentialtremor.org for more information.

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.

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.