ET Has Affected 5 Generations in My Family

By Shari Finsilver,
VP of the IETF Board of Directors

Increasing awareness about essential tremor (ET) has been my passion for almost 20 years.  But, I must confess … I was not very open about my tremors prior to this. In fact, I did everything imaginable to hide them, even from my parents!

My courage came from all the members of my support group. It is often said that when we volunteer, we get much more back than we give. Well, that was so true in my case when I decided to start a support group in Michigan in 2000. I marveled at the candor, courage, and self-pride in many of those members and, eventually, decided to follow their lead to become more open about my own ET.

Joining the IETF Board
When I was invited to join the IETF Board of Directors in 2001, I found another platform that I could use to further raise awareness, while also getting involved in education programs, fundraising, and research. I am committed to expanding the work of the IETF, the most recognized organization helping ET patients and families.

ET began challenging my life at 11 years old. I’ve heard it said that those of us with ET are much more intelligent and creative. Well, I’m not sure I would go so far as to say that … but I did become very creative in developing ways to cope with these troubling tremors! When the IETF compiled a list of coping tips, I was able to share all of mine with all of you.

The Choice to Have DBS Surgery
After having lived with increasingly challenging ET for almost 40 years, I decided to have deep-brain stimulation (DBS) surgery in 1999. DBS changed my life.

ET has, so far as I know, affected five generations in my family. I will continue to do everything in my power to help those of us with ET get more effective medical treatments, increase awareness so the public doesn’t misjudge and label us, better educate the medical community, and fund research that will discover a cure.

Join Us to Help Raise ET Awareness
I hope I can count on each of you to do something that helps the ET community. So many great ideas are listed on the IETF website. If all of us raise our voices about ET, we can educate the world.



Being a Child with ET is Like Being a Tiny Sapling in a Windstorm

By Allison Dyke,
Student at Kuyper College

Allison Dyke

Having essential tremor is like being a tree with leaves shaking uncontrollably in the wind. Even though your roots are strong, you are unable to control the movement of your branches.
However, being a child with essential tremor is like being a tiny sapling stuck in a powerful windstorm. You are not fully developed and your roots have not been completely planted.

ET Diagnosis
Since the age of four, I have battled with essential tremor. My shaky hands and legs made tasks such as eating, tying shoes, and riding bikes difficult to complete. I was just learning how to do these activities, which can be challenging without having a movement disorder. While these tasks were strenuous, the hardest part about being a child with essential tremor was other children and adults jumped to conclusions without understanding what essential tremor is.

“She’s just stubborn,” was often coldly stated to my parents as an explanation of why I was failing at making a perfect bow with my shoelaces. If I wasn’t being “stubborn” I must be either nervous or cold. Fine motor skills were frustrating to master and I became withdrawn from participating in physical activities. It was hard to understand why I couldn’t do what other children my age could do. With supportive parents, I was encouraged to never give up. The saying at my house is, “Where there is a will, there is a way.”

Soon I found an activity where shaking didn’t matter, swimming. It helped rebuild the confidence that this disorder had taken away. I found ways around difficult tasks, such as using assistive devices to improve my penmanship or supporting my elbow when applying makeup. It was clear that the physical and emotional effects of essential tremor were not going to dictate my future.

Connecting with the IETF
Then at sixteen, I discovered the International Essential Tremor Foundation, and wish I would have found them sooner. Their website provided informational downloads that I gave to my teachers and school administrators, so they could better understand this disorder. I connected with other kids my age who were going through the same experiences. IETF encouraged me to reach out to my community by organizing awareness walks and starting a support group. And they provided me with a college scholarship. With their support, I have met wonderful people who understand what having tremors is all about and I know I am not alone.

Now I’m nineteen and people still ask if I’m cold or nervous. But, I’ve learned that sharing my experience and educating others about essential tremor gives me an opportunity to explain that this condition is not just for older adults, but impacts young people as well. An estimated 10 million people in the United States are affected by this condition, yet very few have heard of it or understand it’s impact. Through awareness, I’m no longer a tiny sapling; I am strong oak supported by a dense forest away from the wind.

Editor’s Note
Allison is one of thousands of children and young adults around the world who struggle to live normal lives with essential tremor. She is a former IETF Scholarship Recipient. The scholarship program is one of many support programs conducted by the IETF. Your donations help support these programs and people with essential tremor. Donate today. 

No Boundaries, No Favorites. Essential Tremor Has No Familiar Face.

By Tammy Dodderidge, IETF Marketing and Communications Manager

Who do you picture in your mind when you think about someone who has essential tremor? Chances are, it’s a senior adult or a grandparent. The reality is essential tremor has no familiar face. It afflicts people all ages and races. While senior adults struggle with it, so do middle-aged adults, teens and even toddlers. It doesn’t discriminate based on the color of your hair, or eyes or skin.

This is our message during National Essential Tremor Awareness (NETA) Month in March. We want people to understand that ET has no boundaries. It doesn’t play favorites. It is a serious, debilitating condition for more than 10 million people around the world.

Background on NETA Month
Thanks to a three-year effort by the International Essential Tremor Foundation (IETF), in 2010 Congress passed a House resolution that officially designates March as National Essential Tremor Awareness Month. This month gives ET a platform. Most people have heard of Parkinson’s disease and the physical tremors associated with it, but not many have heard of essential tremor. We need to let them know it exists and then educate them about the needs of people with ET.

The next time you are in a crowd, look around and chances are, someone there has ET. You won’t know it because it’s something that people work hard to hide. You won’t know it because people are embarrassed by it. You won’t know it because people fight it and deny it. You won’t know it because many people who have ET suffer depression and isolate themselves so they don’t even leave their houses.

Take Action
What can you do to take part in NETA Month? Many, many things!

  • The IETF has created some special NETA Month social media banners specifically for Facebook and Twitter. Download them from our website and use them on your social media sites during the month of March (as the cover art or just share them with your friends and followers).
  • Order one of our NETA Month posters and hang it in a prominent area where people will notice it: your church, the grocery store, the library, your office. When someone asks, “What’s this poster? What is essential tremor?” you will have done your job in raising awareness!
  • Watch this Tremor Talk blog site during March. We will be featuring some guest writers who have ET, work in the ET community and advocate for people with ET. Their first-hand stories promise to be insightful and educational – and heartfelt. Share these blogs on your social media sites, or send the links to your friends by email. RAISE AWARENESS!
  • Hold a Do It Yourself (DIY) Fundraiser to support the work the IETF does toward education, research and advocacy. We have a list of DIY fund raising ideas on our website, and we also have special DIY  fund raising posters you can order from us for free to advertise your events.
  • Watch your mail for a letter from the IETF and make a donation to receive an NETA Month t-shirt and/or tote bag. These items are one more way to get ET in the public eye. Wear your shirt proudly and use your tote when shopping, or for carrying items to and from work. If you are not on our mailing list, you can join our mailing list online.

Once we all begin to see ET as a condition that impacts millions of people all over the world, we will begin to realize the need for more research that will lead to new treatments, and hopefully someday, a way to prevent or cure it for everyone.

Speak up, speak out and let’s rock this year’s NETA Month!


New Year, New Opportunities

Patrick McCartney
Executive Director

As we kick off 2018, we are excited about the New Year and the opportunities to promote our mission to provide hope to the essential tremor (ET) community worldwide through awareness, education, support, and research.

The IETF is celebrating its 30th anniversary in 2018. We will kick off the celebration in March, which also happens to be National Essential Tremor Awareness month. There are a variety of ways for you to advocate for more ET awareness and education in your community. To learn more about how you can get involved here.

When we ask ET patients what they would like to see the IETF focus its efforts on, one subject comes up consistently: research to help find a dedicated treatment(s) for ET and, hopefully, someday a cure.

With the generous support of our donors,
we have been able to fund more than
$750,000 in ET research.


If you would like to learn more about the studies your donations have funded and the results they have achieved, you can find more information here.

Also, there are several clinical trials currently taking place that focus on ET-specific medications and wearable devices. If you are interested in participating in one of these trials check out the list of programs on the IETF website. You can also visit for easy access to free information on clinical studies for a wide range of conditions including ET.

Another great way to get involved is through a local support group. The IETF currently has more than 60 support groups around the world. We have a listing of all the supports groups on our website here. Or take part in our online support group through Facebook.

If you can’t find a support group in your area and Facebook isn’t your thing, we encourage you to consider starting a support group. We have all the tools to get you started and help you promote the meetings.

As always, we thank you for your support of the IETF and the ET community. The IETF has so many resources to share with patients, doctors, family members, and caregivers. We hope you will spread the word and help us continue to educate people on the most common movement disorder in the world.



Share Your ET Stories with Me

Hello to everyone in the essential tremor community!

I am new to the International Essential Tremor Foundation and wanted to introduce myself. I am the new marketing and communications manager. My role involves development of messages and stories to educate the public about essential tremor and the impact it has on more than 10 million people nationwide. I serve as editor of our magazine, Tremor Talk, and our Tremor Gram enewsletter. I oversee our social media sites, Facebook and Twitter, and manage our website, among other responsibilities.

I must confess I had never heard of ET before I applied for this position. How could that be? It impacts so many people and yet I was not aware. But I am catching up. Each day I read and hear stories from people of all ages who are living with ET. Just this week I was reviewing the applications from our scholarship recipients and was in awe of their positive outlooks, and also saddened by what they have had to endure. One student was diagnosed at age six, so he has had little experience of NOT having ET. One is a mother of three who said her biggest challenge has been answering her children when they ask, “Will I shake like that when I grow up?”

I am proud to work for an organization that is serving the ET community with awareness and education initiatives, and support, like scholarships. And last year we donated $75,000 toward research initiatives to further better treatment options for ET.

The learning will continue for me, and I am asking all of you for your support in this area. I would not be able to do my work without the ET community at large who share their stories of hope, frustration and, sometimes despair. No, some stories are not happy ones, but these are the ones that may resonate with others who are battling each day. I will do my best to share these stories and keep the lines of communication open. And, I look forward to the day when I can write that story about the breakthrough in research that will help everyone. I know it’s coming . . . keep the faith. . . and keep in touch with me.

I look forward to hearing from all of you out there. Write to me at



IETF Welcomes New Executive Director

Catherine Rice webThe IETF Board of Directors announces that after 18 years of leadership, Catherine S. Rice is retiring as Executive Director of the organization.  Throughout her tenure, Cathy has increased the IETF’s reach to over 100,000 people around the world.  Cathy, along with now retired Kansas House Representative Dennis Moore, in 2010 achieved formal designation for the month of March as National Essential Tremor Awareness Month.  In the last 10 years, she has facilitated 380 free ET patient education events in cities across the U.S., educating over 35,000 people.  Cathy also established a college scholarship program for students having a diagnosis of ET, as well as an ET research grant program that has awarded $1 million, thus far, for promising ET studies conducted by medical investigators.  We cannot thank her enough for her vision, dedication, and commitment to the IETF.

Patrick photoTo continue our desire to further our mission, the Board is pleased to announce Patrick McCartney as the new IETF Executive Director, effective Aug. 17, 2015.  Patrick brings over 20 years of experience with non-profit organizations.  He most recently served as the Executive Director of the Kansas City Kansas Community College Endowment Association.  Previously, Patrick was Vice President of Marketing at the Kansas City Kansas Chamber of Commerce.  His work experience focused on board relations, fiscal management, marketing and communications, and fundraising.  Please join us in welcoming Patrick to the IETF.  With your support, we are confident that he will continue the excellence of the IETF.

One of Cathy’s passions at the IETF was to recognize the achievements of students dealing with ET.  To honor and help continue Cathy’s work with college students, the Board is pleased to announce the establishment of the Catherine S. Rice Scholarship Fund.  This fund will be used to award four scholarships to deserving students both in the fall and winter semesters.  For anyone wishing to recognize the dedication of Cathy, the Board encourages donations to this fund, in her honor.  Information about the fund is available at or 1-888-387-3667. Donations and/or notes to Cathy can also be mailed to IETF, C/O Catherine S. Rice Scholarship Fund, PO Box 14005, Lenexa, KS  66285-4005.

Three new IETF-funded research projects announced

Research-Appeal-2015-Facebook-CoverEach year researchers with an interest in studying the various aspects of essential tremor are encouraged to submit scientific proposals for grant funding from the IETF. To date, your research donations have provided nearly $1 million to fund numerous promising studies. This year, the IETF will fund three essential tremor research grants totaling $80,000. Grant funding was provided to the IETF from donors, people directly affected by this life-altering condition, like you.

The IETF will award $35,000 to the study entitled “Testing the GABA Nucleo-Olivary Hypothesis of Essential Tremor.” The goal of this research is to systematically test whether impaired function or degeneration of GABAergic N-O neurons induces action tremor, supporting the hypothesis that such mechanisms underlie at least some cases of ET. Read more…

The second study to be awarded $20,000 from the IETF is “Essential Tremor Research Program: Cannabidiol Anti-Tremor Action and Mechanisms.” This research will explore the effects of a particular cannabinoid known as “CBD” (cannabidiol) on ET. Unlike the well-known cannabinoid “THC” (tetrahydrocannabinol), which has mood-altering effects, CBD does not impact mood. CBD has already shown some promising initial results in the treatment of epilepsy, pain, anxiety, and other disorders. Read more…

The final study, “Abnormal Climbing Fiber-Purkinje Cell Synapses in Essential Tremor” will be awarded $25,000. This study will be conducted by Dr. Sheng-Han Kuo, Assistant Professor of Neurology at Columbia University in New York. Dr. Kuo’s team will build upon previous research after discovering an unknown abnormality in essential tremor patients at the location in the brain where the neuron’s electrical and chemical signals are transmitted and received. Read more…

Your research donation could make the difference between critical research being funded, or being turned away. Every donation, no matter the size, counts. Help us keep research moving forward! Make a research donation today and learn more about IETF-funded research.

Raising Awareness Year Round

General-Awareness-YR-Facebook-CoverNational Essential Tremor Awareness Month may be over, but efforts to raise awareness don’t have to end on March 31. What if we didn’t just commit ourselves to raising awareness one month out of the year? What if we made a conscious effort to connect throughout the year with our communities to raise awareness about ET? Every day is a great day to increase awareness in your community! ET Awareness can be described as anything you do to help people understand what ET is, why the International Essential Tremor Foundation exists and how we can connect with others to fund more research to find better treatment options and a cure. Our efforts combined throughout the year to raise awareness could help so many people with ET live better lives, find treatment options that work for them and provide support for one another.

Raising awareness throughout the year can be a small or big project, the important part is that we are all keeping ET in the forefront of conversations and increasing the number of connections to the IETF mission. Raising awareness can be as simple as committing your office to hosting a “Jeans Day” each Friday with proceeds benefiting the IETF or distributing IETF materials to your local neurologist or physician. The possibilities are endless. Below are easy examples of how you can continue to raise awareness in your community beyond the month of March.

  • Share our posts on Facebook, Twitter and Google + with friends.
  • Post ET facts and hand out free IETF awareness posters around school, local businesses and your office to educate others about ET.
  • Start a Support Group in your area.
  • Computer Screen Savers: Add the IETF logo to your screen saver and send it to your friends and everyone in your family! Or simply create a text screen saver on your own computer that others will see when you’re away from your desk.
  • Share your story and get an article in your local paper: Contact your local newspaper about media outreach opportunities. You can also include information about how people can contribute.
  • Meet the Press: Does your company distribute a newsletter? Does your company have intra-office email? Take advantage of these…it’s a perfect way to get the word out about ET.
  • Universities & Colleges: Contact your local schools and ask if you can put an advertisement in their school newsletter to create greater awareness. Some organizations may even invite you to make a short presentation.
  • Write to your local politicians: You supported them; don’t you think they should support you?

Have you had a successful awareness event? Connect with us to share your story. Your ideas could inspire others to get involved in creating more awareness for ET. ET awareness can happen 365 days a year. Start today!

IETF Seeks 2015 Fall College Scholarship Applicants

Living with the daily challenges of essential tremor can be tough enough on its own. Living with ET while balancing a heavy course load and managing the financial burden of a higher education, can seem unbearable. The IETF’s scholarship program is dedicated to making sure ET does not stand in the way of an education.

Sarah-KunzwebEach semester, the IETF provides four qualified students with a $500 scholarship to help students of all ages who have been diagnosed with essential tremor achieve their dreams of going to college. Sarah Kunz understands the struggle of ET firsthand. As a past IETF scholarship recipient, she uses her ET as a motivation to help others. “I have a diagnosis of ET; it’s not a disability. It may be a challenge sometimes, but it’s empowered me to achieve my dream,” Kunz said. Kunz uses her scholarship award to pursue a degree in American Sign Language Interpreting at St. Catherine University in St. Paul, Minn. “Not even essential tremor can stop my dream,” said Kunz.

Eligible students must be a high school or GED graduate of any age, attending a licensed, accredited institution of higher learning and must have an official diagnosis of ET. The IETF Scholarship Committee, made up of members of the IETF Board of Directors, will review each application. Students will be judged based on their academic achievement, leadership skills and/or community service, as well as a submitted essay.

The scholarship application deadline is May 1, 2015. Applications can be found at Scholarships may be used to cover the cost of supplies, books, student fees or tuition.

For more information or to help further funding for the IETF scholarships program, please visit

ET Expo Presentations Now Available Online

Untitled-2The IETF recently hosted its’ first-ever ET Expo in Phoenix with much success. Seven world-renowned movement disorders specialists and experts provided ET patients with an incredible educational experience. And now YOU can view the ET Expo presentations online for free. As a way of reaching out to our constituents who are unable to attend seminars in selected cities, we have recorded webcasts of presentations on our website. Each recorded presentation explains what essential tremor is, the diagnosis process, treatment options, current research, assistive technology and more. Click on the button below, register for free and choose the presenter and topic you wish to view.

Charles Adler
Dr. Charles Adler
“Is PD a Risk Factor for ET?”
Sara Dhanani
Dr. Sara Dhanani
“What’s in a Name: The History of ET”
Padma Mahant
Dr. Padma Mahant
“Diagnostic Process & Medical Treatment of ET”
Francisco Ponce
Dr. Francisco Ponce
“Surgical Options for Essential Tremor”
Holly Shill
Dr. Holly Shill
“Brain Bank at Banner for ET Research”
Sara Somers
Dr. Sara Somers
“Therapies for ET”
Alexander Trӧster
Dr. Alexander Trӧster
“Thought, Emotion and Quality of Life in ET”

View WebcastCelebrate National ET Awareness Month this March and share these and other IETF webcasts with your friends and family to help educate and bring more knowledge to the cause. Knowledge is power. Together, knowledge brings us one step closer to a cure.

Special Webcast Only Offer

For a limited time, the book entitled “Essential Tremor: What the Experts Say”, will be made available to you in electronic or printed format when you make your qualifying donation (details below). This beautifully spiral bound book is a comprehensive collection of more than 80 informative articles (196 pages) that will help you gain insight and a better understanding of essential tremor through the knowledge of the world’s finest movement disorders specialists and experts.

For a donation of $30 or more, you will receive an electronic version of the book and for a $50 donation or more you will receive a printed copy. In addition, either donation entitles you to receive a one-year subscription (3 printed issues) at no additional cost to the Tremor Talk publication. Your donations will be used to help fund our awareness, support, education and research programs.