Where has my button been? Join in the fun!

ZoomButtonwithTitleThumbWe’re always looking for fresh ways to bring essential tremor into greater public consciousness. In this high-tech age, we have all sorts of digital solutions, but for our latest effort, we’ve gone decidedly old-school: a simple one-inch button that you pin on your lapel (or wherever you like!). The button features the same Archimedes spiral that is used by movement disorders neurologists to help diagnose essential tremor and that is also seen in the IETF logo.

Based on anecdotal evidence from those of us at the IETF headquarters who’ve worn them out and about, the handsome, bright-green spiral has proven to be a fine conversation starter. During March, for National Essential Tremor Awareness Month, we distributed more than 2,500 of these must-have accessories. They are free and we will be using them all year long to raise awareness about ET.

Join in the fun on our Facebook page at https://www.facebook.com/InternationalEssentialTremorFoundation where people will be sporting their spiral buttons and engaging in Where has my button been? activities. Several of my ET friends in Houston and I posted the first picture on Facebook to commemorate my button’s inaugural visit to Houston for the ET Education Seminar.

You may order your button through our webstore at http://www.essentialtremor.org/SiteResources/Modules/webstore/scripts/default.asp or by calling our toll-free number 888.387.3667. Order a few extra to share with friends, and expand the circle of button-wearers! Let’s see how many different and exotic places these stylish buttons (with their owners!) travel. So please, tell us–and show us–where has your button been?

If asked about the button, you can sound very worldly and educated:

▪ Tell them that the spiral is named after the Greek mathematician Archimedes (287-212 BC);

▪ Tell them that asking a patient to draw an Archimedes spiral is one of the indicators physicians have for diagnosing essential tremor;

▪ Tell them that for millions of people worldwide, the spiral represents hope for a better future;

▪ Ask them to join you in supporting efforts to raise awareness and funds to find better treatments and a cure.



Join Me!

Please join me as I facilitate the upcoming ET Education Seminars on April 20 in Omaha, NE and April 27 in Irvine, CA. More seminars are being scheduled each month so check our website www.essentialtremor.org frequently to see if the IETF will be in your area.

This is a free patient seminar where you will receive some great educational materials and hear some fabulous presentations. To register, go to http://www.essentialtremor.org/Seminars or call our office toll free at 888-387-3667 today!


Movement Disorders Neurologists Named to Best Doctors List

Congratulations to Drs. Maureen Leehey and Olga Klepitskaya who have been named two of the Best Doctors in America for 2013. This is the first time that Dr. Klepitskaya has earned the honor and the third time for Dr. Leehey. To learn more about the Best Doctors list go to www.bestdoctors.com and to obtain information about making an appointment, go to http://www.essentialtremor.org/siteresources/apps/physicians/


Kitchen Assistance

A few days ago, I received a call from an ET patient who has been having problems cutting herself when using sharp knives in the kitchen. At the time, I was at a loss for helpful suggestions. Since then, I did a bit of searching on our very own website! Under Assistive Devices, there is a link to Elder Store, http://www.elderstore.com/adaptive-eating-utensils. They have several serrated rocker knives listed which should provide some help in preparing meals. If you have any other helpful kitchen hints, please let us know.

The IETF is Coming to Houston

IETF Seminar - San DiegoEach year the IETF’s Executive Director travels throughout the U.S. facilitating educational seminars about the diagnosis process and treatment options for essential tremor. The Foundation is happy to be able to bring movement disorder specialists and essential tremor patients together to learn more about ET.

On Saturday, March 23rd, the IETF will be in Houston, TX. Drs. Thenganatt and Fenoy are extremely knowledgeable and have lots of good information to share. At the end of the seminar, attendees will even be able to ask the physicians questions, during a Q&A session.

For more information on this or any of the IETF’s other events, please visit our calendar of events or our Free Seminars webpage. There is limited space, so register today!

A confession

Well, it’s time for me to confess. For weeks, the IETF staff has continued to encourage me to write something for the blog. In response, I would tell them I didn’t have time or I would do it after I completed a specific project. But in reality, I continued to pursue what was familiar and what I was comfortable doing.

But that just hasn’t been the truth. Let me tell you why. I am new to this whole blogging thing. I am uncomfortable posting things online – who would want to read anything I had to say or anything I observed or what I was doing as executive director of this nonprofit? Everyone had their own lives and busy schedules and unless I had some earth shattering news to impart, there was no need for me to post anything. Besides, the IETF staff were so much more better at this – so much smarter and they liked doing it!

So here I am, a blog neophyte. Ashamed to admit it – but true! So I will begin my journey by posting weekly and sharing my ET world and experiences with you. Please don’t judge too harshly – remember the learning curve!

I will do my best and actually, I am sure you, the readers, will more than likely encourage me. So I have nothing to fear but the fear I impose upon myself. So here I go and I invite you to travel with me along this yellow brick road – who knows, I might just get good at this!


Last week the IETF moved into new offices just down the hall from our prior office space. We have a bit more elbow room, extra storage space, and room to grow in the future.

For those of you who tried to reach us last week while our phones were down during the move, thanks for your patience. We’re back up and running.

We’ll post some photos of our new and old office space later this week.

As you prepare for Thanksgiving (for those celebrating the holiday), we hope you travel safely and give thanks for the people in your life.

We’re thankful that we can reach so many people with ET each year and learn from your experiences so that we can better serve others.

Best wishes and Happy Holidays.

Essential Tremor, Parkinson’s disease, and DaTscan

Ronald M. Schwartz, MD, of the Neurological Research Center at Hattiesburg Clinic, MS recently gave an interview about the DaTscan test, an imaging agent that was approved by the FDA. The DaTscan is a nuclear medicine test that enables doctors to differentiate between Parkinsonian syndromes and essential tremors.

This video is posted on our website – Essential Tremor in the News.

DaTscan is the first FDA-approved diagnostic imaging agent to help physicians evaluate neurodegenerative movement disorders, such as idiopathic (of unknown cause) Parkinson’s disease (PD). This agent may be used in conjunction with other diagnostic evaluations to help differentiate essential tremor (an involuntary shaking of the hands, head, and voice) from tremor due to PS. DaTscan cannot differentiate between the different types of PS.

Learn more about DaTscan’s use as a diagnostic tool.

Chicago Bound

What a great time we had at the ET Seminar on Saturday, October 6 in Northbrook, Il. Dr. Dalvi was terrific and gave the attendees loads of information about the diagnosis process, treatment options, and updates on DaTscan.

DaTscan is a radioactive drug that is injected into your bloodstream to help take pictures of areas of your brain using a special camera. Your doctor may decide to do this imaging test using DaTscan contrast along with other medical tests to help decide if your movement difficulties are due to a parkinsonian syndrome (PS) or essential tremor.

Research updates were also provided on Focused Ultrasound as well as other studies being conducted across the country.

I stayed after the event and visited at length with several people. I net new support group members as well as spoke to members I have known for years. The group is led by Gladys Keats who has led the group for 15 years. She provides a place for so many to call “home” during the meetings. A place where no one is judged and everyone understands the impact that essential tremor has on each group member. Gladys is such a warm and engaging person and I have personally been privileged to have work with her over the years. Gladys told me she thinks about retiring as leader but said every time she mentions it, someone in the group tells her how much they need her so she agrees to stay on another year. Thank you Gladys for being such an inspiration to all of us!

I also want to recognize Howard Mirsky, my dear friend who has provided so much support as co-leader  for many years as well as an ardent advocate for the IETF. Thank you Howard for all your hard work and for bringing important topics of conversation to the group.

I also met a special couple who has a 22 year old son, Danny, who was diagnosed with ET. They told me how much the seminar helped them understand ET and the information that was presented was priceless. Many others told me how appreciative they were and they wanted to hold another seminar next year. The results always remind me how many people are affected and how much these seminars help them. It makes all the hard work worthwhile.

The ET Seminar was filmed and will be available on the website, YouTube and on webcast sometime in November. Watch your email for a Tremor Gram announcement. Tremor Gram is our free online electronic newsletter so get signed up now.

Future ET Seminars between now and Thanksgiving will be held in the following cities, Tinley Park, Il; Fort Myers, FL; Tacoma/Seattle, WA; Dallas, TX and Downey, CA. The seminars are free so register now before it’s too late.