Tremor Gram – April 2023

Brain Donation Helps Advance Science
Imagine having an impact on a breakthrough treatment for essential tremor (ET). It’s possible for those who opt to become future brain donors.

In our latest Talking Essential Tremor podcast, “Talking about the Brain Donor Project,” Tish Hevel, CEO of the Brain Donor Project, explains the process of becoming a brain donor. Brain donation is critical to the role of identifying treatments and cures for all kinds of brain disease, including ET. 

The Brain Donor Project was established in 2016 to raise awareness of the critical need for donated brain tissue to advance the science of brain disease and to simplify the process of becoming a brain donor. To date, more than 17,000 people have taken steps to become a brain donor, representing more than 160 categories of brain disease. Almost half of brain donors have a healthy brain, which is called a control brain. So people with neurological conditions and those without, qualify to be brain donors.

“We spend a lot of time thinking about what we’re going to do with things when we die. What are we going to do with our stuff and what are we going to do with our money. And you’re making hard decisions about those things,” Tish said. “But the truth is, you’re sitting on one heck of a gift. And it’s important and it makes sense to think about what you’re going to do with that.”

Go online to the Brain Donor Project to learn more.

Apply for a College Scholarship from the IETF
The IETF is now taking applications for college scholarships for the 2023-2024 school year. Each year, the IETF awards up to six $3,000 scholarships to qualified post-high school students diagnosed with essential tremor (ET) through its Catherine Rice Scholarship Program.

Scholarships are awarded based on academic success, community service, leadership skills and an essay submission. They can be used for supplies, books or tuition at licensed, accredited institutions of higher education (including trade schools). Undergraduate, graduate and doctoral students may apply.

The application deadline is May 1, 2023. Applications and more details are available on the IETF website. Scholarship winners will be notified by July 15, 2023.

It’s National Volunteer Week! 
National Volunteer Week, April 10-16, 2023, is about taking action and encouraging individuals and their communities to be at the center of social change – discovering and demonstrating their collective power to make a difference. Thank you to all our volunteers for your desire to help those in your community who are affected by ET!

From individuals raising awareness and support for ET by making presentations and sharing information in-person and online, to our selfless ET Support Group Leaders, we are thankful for your passion and dedication to serving the ET community.

The IETF is always accepting applications for new support group leaders. Learn more about the role of support group leaders and how to get a group started in your area by visiting 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:

·        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.