Tremor Gram – November 2023

GivingTuesday is a Day to Support Students with ET

Since 2011, the International Essential Tremor Foundation (IETF) has been providing support and encouragement to young people with essential tremor (ET) through its Catherine Rice Scholarship Fund. Each year, we award up to six $3,000 scholarships to deserving students.

GivingTuesday 2023 art

GivingTuesday, the international day of doing good, is November 29. At the IETF, we can’t think of a better day to support our future leaders and advocates for the ET community – our students. All donations you make on GivingTuesday go directly to the IETF’s scholarship fund.

The transition from high school to college can be unsettling to a young person, especially one with ET. A scholarship from the IETF can show these students there is an entire community behind them, supporting them on their journey. Please consider a donation to the scholarship fund now or on GivingTuesday.

Do you want to see the impact of your past scholarship donations? Take a look at this story, “Where are They Now?” from our October 2021 issue of Tremor Talk magazine, when we followed up with some of our former scholarship recipients.

Informing Your Workplace about Your ET

Along with impacting daily activities and tasks, essential tremor (ET) may affect workplace performance. Anything involving the use of fine motor skills can be challenging – like using the computer keyboard or mouse, or small tools and office equipment. For those with head and voice tremor, communication can be affected.

Talking-Essential-Tremor-Podcast-Art-Square

Is it necessary to inform your employer about your condition? If so, when? And what is the process? These are questions many people ask.

Fred Gutermuth has experience in this area. He’s retired now, but when he was employed full time he struggled while using the computer and his handwriting was unreadable.

He talked to his employer, and they put a process in place to provide accommodations for him. He shares his experience in our latest Talking Essential Tremor podcast, “Sharing Your ET Diagnosis with Your Employer.”

The Americans with Disabilities Act requires employers with 15 or more employees to provide qualified individuals with disabilities an equal opportunity to benefit from the full range of employment-related opportunities available to others. Learn more through the ADA website.

Recognizing and Supporting Our Caregivers

November is National Family Caregivers Month (NFCM), a time to recognize and honor family caregivers across the country and raise awareness to caregiving issues.

Having a caregiver who provides emotional support and physical assistance is life-changing for someone with essential tremor (ET). They can help with everyday tasks such as buttoning/zipping clothing, writing and eating. And they provide much needed emotional support.   

Lorena and Donald Rogers

Lorena Rogers is a caregiver for her husband, Donald. They have been married for nearly 25 years. When they met, his ET was present and she saw it as quirky – a part of his personality. Recently he asked her, “Is this what you signed up for?” Read her heartfelt blog.

Thank you to all our ET caregivers! Your selflessness and dedication are incredible gifts. Please remember, while you are caring for others, it is important that you also take care of yourself by:

  • Making time for yourself. Do something just for you every day.
  • Seeking support from other caregivers. Connect with others for ideas and emotional support.
  • Taking care of your own health. Get exercise each day and try to maintain a healthy diet.
  • Accepting offers of help and suggesting specific things people can do to help you.
  • Thinking positive. Make peace with the things you can’t change and let go of guilt.
  • Patting yourself on the back! You are making a difference.

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:

artwork for clinical trials
  • The Essential3 study is an at-home research study evaluating an investigational drug, to see if it may improve your ability to complete everyday tasks, such as eating, drinking and dressing. The Essential3 study has been designed so that you may participate from the comfort of your own home. There is no travel or trips to the doctor’s office required. If you would like to learn more about this study and to see if you qualify, please visit Essential3study.com  
  • 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.
  • 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.
Categories: Tremor Gram