Congrats to Our Spring Scholarship Recipients!
The IETF is proud to support students with essential tremor (ET) as they pursue their higher education by presenting them with college scholarships. We recently awarded $1,000 scholarships to the following students:
· Kaytlyn Gregory, University of Georgia, Athens
· Marianne Lacerte, University of Toronto
· Jillian Mars, New Hampshire Technical Institute, Concord
· Thomas Whitley, Amherst College, MA
The IETF’s scholarship program started in 2011 to recognize the achievements of students with ET. It was named to honor longtime IETF Executive Director Catherine Rice who was passionate about supporting these students. To date, the IETF has awarded $67,000 in college scholarships.
Applications are open now for fall scholarships. Any student with ET pursuing a higher education degree (including a master’s or doctorate) from a licensed, accredited educational institution or trade school may apply.
Scholarships are made possible by your donations and funds from the Lois and John Lichliter Estate. If you want to be involved in supporting these students as they work toward their higher education goals, consider making a donation.
FDA Grants New Approval for Exablate Neuro on Second Side
Insightec has received additional FDA approval for treating essential tremor with its Exablate Neuro platform. The announcement came in December of 2022.
Essential tremor commonly affects both sides of the body. The new approval allows appropriate patients to receive treatment on their second side at least nine months after treatment of the first side.
Exablate Neuro uses focused sound waves safely guided by MRI. It provides tremor treatment to patients with medication-refractory essential tremor and Parkinson’s disease.
“This FDA approval is a very important milestone for us and demonstrates our unwavering commitment to expanding the treatment options for people living with essential tremor,” said Dr. Maurice R. Ferré, CEO and chair of the board of directors at Insightec. “It’s very common for patients who’ve benefited from tremor reduction from the first side treatment to ask about having the second side treated. This approval paves the way for them to do that.”
Join Our Online Support Group
“Jane” has noticed her essential tremor (ET) seems to be progressing with age. “Tom’s” doctor just prescribed gabapentin and he’s not sure how his body will react. “Crystal” is trying to set up a 504 Plan for her son at school and doesn’t know what questions to ask.
These people live in different parts of the world and are experiencing different challenges, but they are part of a community of people with essential tremor on whom they can rely for support. It’s an online group called the Essential Tremor Awareness Group and it’s managed by the International Essential Tremor Foundation (IETF). Connecting people with others who have similar ET symptoms and challenges is the premise behind this private support group on Facebook.
The Essential Tremor Awareness Group is open to anyone impacted by ET. It has been in existence for around 13 years and has more than 15,000 members worldwide.
Want to be part of the conversation? Request permission to join by answering a couple of simple screening questions.
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.
How long before the FUS treatment will target the outflow tracts instead of the thalmus?
We don’t know the answer to that, but we have reached out to Insightec with this question.
We reached out to Insightec with your question and their response is below:
We aren’t aware of any planned trials of focused ultrasound that target other structures or tracts beyond the thalamus in essential tremor. While some groups have explored different targeting strategies, there are some safety concerns because targeting the “tract” isn’t very well validated and results in an inferior lesion that is more likely to impinge on the internal capsule. The validated target which we have safety data for is within the ventral intermediate nucleus of the thalamus (Vim), which is a more superior lesion with an increased safety margin.
I’d like to be a clinical trial participant..
Wonderful! The study locations and criteria for participation vary, but you can learn more by looking at the studies taking place and clicking on the links included in the information. We have many listed on our website, https://essentialtremor.org/what-we-do/research/research-recruitment/
Thank you
Besides donating, how may I help? My ET is progressing but not to the point of interrupting my daily life. I feel fortunate.
There are number of things you can do to help. Here are some ideas:
Start a support group in your area. Support groups are a way to connect with others in your community to learn, share and support each other. We have a training guide for leaders that we provide. Learn more on our website: https://essentialtremor.org/about-us/volunteer/.
Consider writing a blog sharing your experiences with ET, and even some tips that can help others. We share blogs during National Essential Tremor Awareness Month in March. Reach out to tammy@essentialtremor.org for more information.
Sign up to participate in a clinical trial to help with ET research. We have a list of clinical trials on our website. https://essentialtremor.org/what-we-do/research/. See if you qualify or if there is one near you by clicking on the links included in the listings or call them if there is a phone number listed.
Consider brain donation. Brain banks are set up to study the brains of individuals with ET (postmortem) to learn more about how it impacts the brain. Learn more brain banks on our website: https://essentialtremor.org/resource/brain-bank/.
FUS was not possible for me as the MRI showed that my skull was too thick alas even though I traveled half way across the globe in the hope of having it. When will this problem be solved
The Amherst I know is in MA not ME!
Thank you for reaching out — yes, you are right! We used the wrong abbreviation for Massachusetts. The information has been corrected in the newsletter online. Here is the link: https://essentialtremor.org/tremor-gram-january-2023/
Please let me know how I can receive more information regarding the clinical trial for my not so “ benign” essential tremor.
Thank you kindly
Denyse Feeney
We have a list of clinical trials on our website. https://essentialtremor.org/what-we-do/research/. See if you qualify or if there is one near you by clicking on the links included in the listings or call them if there is a phone number listed. Another great resource for clinical trials is http://www.clinicaltrials.gov.