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.
The 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.
To 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 www.essentialtremor.org/scholarships 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.
The International Essential Tremor Foundation is pleased to award four students who are affected by essential tremor with $500 scholarships for the 2015-2016 academic year: Tyler Criswell from Altoona, Ala.; Karissa Hartzell from Andover, Ohio (pictured left); Katie Merrill from Arvada, Colo.; and Hannah Spence from Colchester, Vt.
“These four students exhibit impressive qualifications based on academic and extracurricular activities in their communities and will become outstanding, future leaders in helping create more awareness about essential tremor,” said Catherine Rice, Executive Director of the IETF.
People with essential tremor have to be adaptable. Daily activities are often difficult, if not impossible, to accomplish without some type of assistance. It takes a special type of person to look obstacles in the eye and continue to push forward, regardless of the amount of time or effort it takes. It takes drive, passion, and a strong sense of self, and these four scholarship recipients truly display what it takes to be successful in their college careers while coping with ET. Read more about their stories here.
IETF scholarships are awarded to qualified students of all ages who have been diagnosed with ET, to lessen the burden of higher education. The scholarship can be used for supplies, books or tuition at licensed, accredited institutions of higher education (including trade schools) and are paid directly to the educational institution. For more information about the IETF scholarship program, please visit www.essentialtremor.org/about-the-ietf/scholarships.
Each 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.
Researchers at the University of Washington are developing a new device to help monitor and record tremor changes in Deep Brain Stimulation (DBS) patients. With the new Activa PC+S device, developed by Medtronic, stimulation can be turned on and off, leading to battery conservation of the device — an issue for current DBS technology. A person with essential tremor could detect their tremor and adjust the stimulation within clinician set limits.
The Medtronic Activa PC+S sits in the chest with electrodes, electrical conductors that make contact with a nonmetallic part of the circuit, wired into the brain. The electrode doesn’t have to be used to stimulate but since it is present, it can still be used to record tremor to later analyze for adjustments, if needed.
Researchers are also developing an Android smartwatch app to communicate with the piece of hardware from smartphones and smartwatches. When the patient senses the tremor, they can enable stimulation and modify within parameters in real time without a computer or without visiting their physician.
This device is not yet FDA-approved and still in early research stages. For more information visit, The Daily.
After 18 months of countless prototypes and trials, the S’up Spoon is now available. Started from a Kickstarter campaign, the S’up Spoon was designed originally for one person with cerebral palsy. But now the product is available to all who may benefit from its ability to help, including those with essential tremor.
Unlike a normal spoon, which normally requires your upper lip/teeth to pull content off, this requires you to tip food into your mouth. Simply scoop contents into the S’up Spoon, lift the spoon backwards, bring to lips and tip the contents into your mouth. The inclusive spoon is designed to reduce spillage, promote social interaction and make a wider range of food accessible. Each dishwasher safe spoon is made from plastic and weighs an estimated 25g. The item is produced and shipped from the United Kingdom and retails for £15 or $23 US (Shipping and handling not included). For more information visit, www.sup-products.com.
National 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.
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!
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.
Each 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.
Selecting the right doctor for you isn’t always easy, and it shouldn’t be. When you put your life and health in someone else’s care, you should feel confident that this individual has the right blend of qualifications, skills and personality traits to give you the care you need. But shopping for a doctor can be overwhelming. The International Essential Tremor Foundation can help make the process easier. The IETF has an international directory of movement disorders neurologists and ET specialists who are credible, professional physicians approved by the IETF Medical Advisory Board.
A highlighted example of an expert physician found through the directory is Dr. Arshia Sadreddin. Dr. Sadreddin recently relocated her practice from Barrow Neurological Institute in Phoenix to California Pacific Medical Center in San Francisco. Dr. Sadreddin is a board certified neurologist who completed her medical education at Ross University School of Medicine and her internship, residency and fellowship at St. Joseph’s Hospital & Medical Center in Phoenix, AZ. She is a member of the IETF Medical Advisory Board. Dr. Sadreddin specializes in the treatment of patients with Parkinson’s disease, Huntington’s Disease, various tremors including essential tremor, dystonia, and facial spasms. Her philosophy of care is proactivity and partnership in care through human kindness.
To find a highly-skilled ET specialist like Dr. Sadreddin in your community, visit the IETF website. Make your association with your doctor a confident and comfortable relationship worth the extra effort.
Contact Info: Arshia Sadreddin, MD Movement Disorders Specialist California Pacific Medical Center-Pacific campus 2100 Webster St. Suite 115 San Francisco, CA 94115 Telephone: (415) 600-7886
The 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.
Dr. Charles Adler “Is PD a Risk Factor for ET?”
Dr. Sara Dhanani “What’s in a Name: The History of ET”
Dr. Padma Mahant “Diagnostic Process & Medical Treatment of ET”
Dr. Francisco Ponce “Surgical Options for Essential Tremor”
Dr. Holly Shill “Brain Bank at Banner for ET Research”
Dr. Sara Somers “Therapies for ET”
Dr. Alexander Trӧster “Thought, Emotion and Quality of Life in ET”
Celebrate 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.