Tremor Gram – June 2023

Download our ET Patient Handbook

Get a comprehensive look at essential tremor with the IETF’s “ET Patient Handbook.” This 20-page brochure provides an overview of the condition and practical information to help both patients and caregivers.

Sections include:

·        ET diagnosis

·        Preparing for a neurological evaluation

·        ET vs PD comparison

·        Information on DaTscans

·        Commonly prescribed medications

·        Ways to minimize ET’s impact

The ET Patient Handbook is available on the IETF website for you to read or download. A Spanish version is also available. It’s just one of the many resources the IETF provides to support and educate people impacted by ET.

Common Estate Planning Mistakes

No one likes to think about their own mortality, but estate planning allows individuals to leave a legacy to whomever – or whatever – is important to them. Through the years, the IETF has worked with dozens of individuals who have included bequests and other gifts to the IETF in their estate plan.

Questions often come in about what this process means so IETF Executive Director Patrick McCartney asked estate planning attorney Chris Gaughan, with Gaughan & Connealy, to share some tips via video.

The video is our latest virtual education event, “7 Estate Planning Mistakes Most Families Make.”

When making plans for your future and your estate, remember that legacy gifts can be made to the IETF. They can be designated for research, scholarships, awareness or the general mission of the organization. Most importantly, they can help bring us one step closer to a cure for essential tremor, positively impacting the lives of millions of people in the future.

IETF Welcomes New Support Groups

If your essential tremor has you feeling misunderstood and alone, consider joining one of the IETF’s ET Support Groups. We have dozens of ET Support Groups throughout the U.S. and several other countries.

Three new groups have been established in 2023 so far:

• Elkhart, IN ET Support Group, led by Becky Troyer
• Pleasanton, CA ET Support Group, led by Amav Godavarthi
• Sun City Center, FL ET Support Group, led by Gezil Andrews

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. While many meet in person, some meet online and welcome new participants. We list meeting times and places on our website.

Watch our website and social media for updates on other newly formed groups. If you don’t see a support group 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/.  

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.