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.

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New, exciting changes for DBS patients

Activa PC+SResearchers 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.

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S’up Spoon launches for those with shaky hands

groupshot-small-950x713After 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.

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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!

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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 www.essentialtremor.org/about-the-ietf/scholarships. 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 www.essentialtremor.org/about-the-ietf/scholarships.

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Choosing the Right Doctor: IETF ET Specialist Directory

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.

Arshia Sadreddin webA 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

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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.

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Celebrate National ET Awareness Month This March

Awareness-Facebook-Cover-Photo-21Raising awareness for essential tremor is the first step to increasing knowledge. Together with more knowledge, we can accelerate scientific research, advance treatment options and address the challenges of everyone affected by this life-altering condition.

This March, share that it is National Essential Tremor Month (NETA). There are so many simple ways to get involved to promote ET awareness.

Your contribution, no matter how big or small, will help fund programs that support and promote essential tremor awareness worldwide. Awareness builds knowledge. And together, knowledge can bring us one step closer to greater understanding, better treatment options, and ultimately, finding a cure. Help us build momentum worldwide!

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New ET Expo Coming Feb. 21

Expo-headerDiscover the unknown and explore the many facets of essential tremor at the IETF’s free, first-ever ET Expo. On Feb. 21, 2015, ET patients and their family and friends from across the nation will join together to get a first-hand look at the ins and outs of essential tremor.

To build on the current educational seminar series platform, the IETF is expanding on these events to include a more comprehensive approach to meet the needs of patients in all aspects of ET in a new, dynamic setting. The first pilot for the expo format will be tested in Phoenix, AZ. If successful, ET expos will be strategically planned for different regions throughout the year.

“This type of event is new and exciting for us! We hope it sets a precedent for many larger, full-scale events to come in the future for our ET patients all throughout the country,” IETF Executive Director Catherine Rice said.

The IETF has teamed-up with world-class neurologists, movement disorders specialists and experts to host a day of discovery and education at this interactive expo. The day will feature presentations by doctors on the diagnostic process, treatment options, current research, coping tips and more. Hear from experts during a panel Q&A discussion following the presentations. Interactive exhibits from IETF partners will allow precipitants to get a hands-on approach to learning more about their condition and the resources available.

“The ET Expo isn’t just your ordinary health seminar. This is something that’s never been done before in the ET community. It’s destined to have a profound impact on our members while furthering the IETF’s mission,” Catherine said.

The ET Expo will take place at the Hyatt Regency Phoenix from 8 a.m. to 2 p.m. This expo is free, but pre-registration is required. Lunch will be provided and choices can be selected at registration. Parking will be validated. Donations welcomed. Register by calling toll-free 888.387.3667 or visit www.essentialtremor.org/seminars.

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Make an Impact on #GivingTuesday

Web-Banner5When the fun and feasting of Thanksgiving is over, and two days of getting great shopping deals on Black Friday and Cyber Monday are behind you, there’s one more important day to remember, GivingTuesday. On December 2, we’re joining a national day of generosity, #GivingTuesday. It’s a day when you can make a big impact on essential tremor and on your friends, family and neighbors living with this life-altering condition.

With your help, we’ll raise funds to further research to find the cause of essential tremor that leads to treatments and a cure, increases awareness, and provides educational materials, tools, and support for healthcare providers, the public, and those affected by ET.

How can you be part of it? Here are a few simple ideas:

With your support, we can raise ET awareness for more support, better treatments, and ultimately, finding a cure.

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