Tremor Gram – August 2023

Collaborative Arts Project Focuses on Essential Tremor

A collaborative arts project is in the works that will raise awareness about essential tremor (ET).

TREMOR is the latest Response Project being undertaken by pianist and music professor Brianna Matzke, of Wilmington College, in Ohio. It will premiere in 2024.

Learn about this innovative collaboration in our latest Talking Essential Tremor podcast, “TREMOR: The Response Project.”

Brianna was in her 20s when she began to see signs of ET and she was formally diagnosed in 2020. TREMOR: The Response Project is her way of announcing her condition, while increasing awareness and understanding. She has asked five composers, a sound installation artist, a videographer and a collection of visual artists to create new artwork in response to her shaking hands.

“I’m hoping that through the artists that I’ve curated for this project we’ll be able to raise awareness not only about essential tremor, which is a really important story to tell, but also speaking more generally about society’s preconceptions about ability and disability. I’m hoping to be able to break those preconceptions wide open,” Brianna said.

TREMOR: The Response Project will be accessible to people of all abilities. It will be sensory-friendly and include accommodations for those with hearing and visual impairments. Learn more at www.theresponseproject.org/tremor.

Congratulations to Our 2023 Scholarship Recipients!

The IETF recently awarded six $3,000 scholarships to college students with essential tremor through its Catherine Rice Scholarship Program.

Congratulations to:

• Tessa Astle, Brigham Young University, Provo, UT
• Kaytlyn Gregory, University of Georgia, Athens
• BreAnne Hamby, Southwest Baptist University, Bolivar, MO
• Jacob Kidney, University of Texas Rio Grande Valley, Edinburg, TX
• Grace Meehan, The University of Queensland, Brisbane, QLD (Australia)
• Delaney Reper, Christopher Newport University, Newport News, VA

Eligibility for scholarships includes an essential tremor diagnosis, a minimum 3.0 unweighted GPA and community service and/or leadership roles. Students also are required to submit an essay answering the question, “How has ET affected my life?”

Since 2015, the IETF has distributed more than $85,000 in scholarship money to support students as they work toward achieving their higher education goals.

Scholarships are made possible by your donations and funds from the Lois and John Lichliter Estate. If you want to be involved in supporting students with ET, consider making a donation.

Print Your Personalized ET Medical Alert Card

The IETF has made it easy and convenient for you to receive a personalized Essential Tremor Medical Alert Card. We have a template setup on our website that allows you to fill in your information and print your card right from your own home!

The card states, “I have a condition called Essential Tremor” and explains what ET is. It includes a section where you can list an emergency contact, your doctor’s name and any allergies or other medical conditions. 

The cards are free to anyone in the ET community. Carry them in your wallet or billfold in the event of an emergency or to show to others who might have questions about your condition.

Click here to see the template and print yours today!

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:

·       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.

·       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.

·       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.