Comprehensive Meeting Focuses on Tremor Disorders

By Shari Finsilver
IETF Board Vice President

Calling all tremor patients … I have some great news. We are in very good hands!

I had the privilege of attending the 1st International Tremor Congress in New York City on May 11 & 12. I must say, I was totally blown away . . . by the level of research that is currently being conducted around the world, by the wide age range represented, and by the organizational excellence of the entire meeting.

The goals of the conference were:

  • Formulate an evidence-based approach to optimize the treatment for tremor disorders.
  • Develop evidence-based scientific knowledge for the future clinical study design in tremor disorders.
  • Describe the up-do-date clinical diagnosis and treatment in each tremor disorder.
  • Indicate the cutting-edge scientific discovery for tremor, and also current tremor therapy development.

Among the approximately 200 people attending this inaugural conference, there were the experts present . . . those who have created the science of tremor research, whose names grace hundreds of medical journal articles, as well as the textbooks used by the numerous students whom they have all mentored. Then there was the next generation of tremor researchers . . . those who are conducting novel, original studies, leading the way with their brilliant ideas. Also present were students including students in the fields of neurology, movement disorders, public health, etc. They were there to learn, collaborate, and be challenged to continue this very important work. Since much of the successful research is a collaboration between academia and industry, many of those industry representatives were also present, ready to learn with the rest of us.

The first meeting day was devoted to science. This included research projects involving the circuitry of the brain, a focus on Purkinje cells, on climbing fiber synapses, and on neuroimaging, just to name a few areas of interest. The second day focused on the current and emerging therapies, ranging from medications under development for tremor control, to surgical interventions (both invasive and non-invasive,) to wearable devices that can improve tremor control.

The IETF was proud to be one of the many sponsors of this first Tremor Congress. A huge thank-you goes out to the course directors and their committee:  Sheng-Han Kuo, M.D. (Assistant Professor of Neurology, Columbia University), Elan D. Louis, M.D., M.S. (Professor of Neurology and of Epidemiology: Chief, Division of Movement Disorders, Yale University), and Ming-Kai Pan, M.D., Ph.D. (Assistant Professor of Medical Research, National Taiwan University). And, also to the faculty, whose presentations were outstanding.

Are Essential Tremor and Parkinson’s Connected?

It’s a common misdiagnosis. Someone notices a tremor in their hands or body and automatically they think they have Parkinson’s disease. Some have said their doctor prescribed a Parkinson’s disease medication for them until they discovered the correct diagnosis was essential tremor (ET). And sometimes a person is diagnosed with ET when they are actually in the early stages of Parkinson’s.

Parkinson’s disease and ET will always be connected because of their similar physical symptoms. There is more public awareness about Parkinson’s, but ET is eight times more common. At the International Essential Tremor Foundation, we hear from individuals who have both conditions.

So what are the differences? How can you learn more? One way is to take part in the IETF’s upcoming FREE teleconference, “ET vs. Parkinson’s: How Do They Differ?” Mark your calendar to join us:

WEDNESDAY, APRIL 18, 2018
12 p.m. pacific time
1 p.m. mountain time
2 p.m. central time
3 p.m. eastern time

Teleconference Speaker
Dr. Holly Shill

Dr. Holly Shill, chair of the IETF medical advisory board, will be the teleconference speaker. Dr. Shill is the director of the Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix. Her expertise includes the diagnosis and treatment of involuntary movements, essential tremor, Parkinson’s disease, Huntington’s disease, dystonia, and ataxia. IETF Executive Director Patrick McCartney will be the teleconference moderator.

How Can You Participate in the Teleconference?
If you’ve never participated in a teleconference before, don’t worry, it’s easy! The entire conference is conducted over the phone; no internet or computer is required. You can listen in by yourself, or host a teleconference party in your home and put us on speaker phone. (Then you can have your own group discussion afterward!)

But first, give us a call, 1-888-387-3667, or go online to register. Reservations are required because our capacity for callers is limited. When you register, you’ll receive a call in number and conference code. And, you’ll have the opportunity to give us a question or two that you would like to have answered during the teleconference. Here are a few questions that have already been submitted:

  • Is Parkinson’s more in the feet and ET in the hands?
  • Does ET and/or Parkinson’s affect your memory?
  • What percentage of people with ET develop Parkinson’s?

Our Past Teleconferences Are Online
The IETF conducts several teleconferences each year as part of its educational offering to people with essential tremor. All teleconferences are recorded and posted on our website so anyone can log on anytime to listen to past ones.

We also host educational forums several times a year in cities throughout the U.S. Our next forum is scheduled for June 23, 2018 in Minneapolis. You can read more about this online.

The IETF’s goal is to provide hope to the essential tremor community through awareness, education, support, and research. These teleconferences are one way we carry out the “education” part of our mission.

We know that by providing educational programs, we can continue to communicate the latest information about essential tremor. Join us on April 18!

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.

Learning about Essential Tremor: Live Event & Webcast

Webcast-for-BlogIn partnership with Vanderbilt University Medical Center, join us for a free ET event in Nashville on the diagnosis process, treatment options, current research and more. This special event will also simulcast via a FREE LIVE WEBCAST nationwide for those who cannot attend in person.

Speakers:

  • Fenna Phibbs, MD – Neurologist
  • Hong Yu, MD – Neurosurgeon
  • Cissy Voight – Physical Therapist

Saturday, Aug.16, 2014
Hutton Hotel, Nashville, TN
1808 West End Ave. | Nashville, TN 37203
or
Via Live Webcast
9:00 a.m. – 12:30 p.m. CT

Register today!
Live Event: essentialtremor.org/seminars
Live Webcast: bit.ly/Aug2014Webcast

Free Brain Health Fair

BrainDive deep into the boss of our bodies and explore the wonders of the brain with us at the FREE Brain Health Fair in Philadelphia. On April 26, the IETF will join world-class neurologists and several other neurological organizations to celebrate Brain Health Awareness Day and to educate local families. Brain Health Fair participants will get a first-hand look at the ins and outs of the brain. Activities include vent features educational classes on brain diseases and treatment options, health screenings, free giveaways and resources, plus interactive exhibits for the whole family.

The Brain Fair will be open to the public from 10 a.m. to 4 p.m. at the Pennsylvania Convention Center and is presented by the Brain Foundation and the America Academy of Neurology, educational partners of the IETF.

The IETF is just one of several exhibitors at the event, so please stop by our booth and also check out other exhibitors. Registration is free, but encouraged in advance. To register or to learn more about the event, visit www.BrainHealthFair.com.

Brain Health Fair
Saturday, April 26, 2014
10 AM – 4 PM
Pennsylvania Convention Center, Exhibit Hall A
1101 Arch Street, Philadelphia, PA 19107

Activities:
Hold a human brain
View animal brains
Examine microscopic brain tissue
Free bike helmets (limited)
Participate in swim cap brain art
Learn to cook brain healthy food
Therapy dogs
Brain Health Classes
Cranial Nerve Experience Stations
Kid’s Play Area
Music Performances
Celebrity Autographs
And more!

The IETF visits Ohio

Cleveland MarriottJoin me, Dr. Walter and Dr. Miller on Saturday morning, April 5, 2014 from 9:30 to 11:30 a.m. at the Cleveland Airport Marriott to learn more about essential tremor. We’ll discuss the diagnosis process for ET, what treatments are currently available, and what is going on in ET research. Plus, we’ll have a special presentation on occupational therapy and assistive devices.

This is one ET presentation you are not going to want to miss. And it’s free to everyone who wants to learn more, so bring your friends and family along. Just visit www.essentialtremor.org/seminars for registration information and driving directions. I look forward to meeting you!

Meet Me in St Louis!

Come spend some time with me and Dr. Pratap Chand Saturday morning, August 17, 2013 from 9:30 – 11:30 am at the St Louis Airport Marriott learning more about essential tremor. Go to www.essentialtremor.org/seminars to register. I look forward to meeting you and together learning about the medications, surgical options and research that is being done in ET.

Come and wear your button and take a picture with me so we can show people where our buttons have been and also to increase awareness around the St Louis area!

Milwaukee ET Event

We had a great time in Milwaukee with 80 people attending the extremely educational ET seminar. The presentations were very well done and provided a lot of information. Dr. Pahapill talked about his 20 year experience in the treatment of ET with deep brain stimulation and Dr. Blindauer reviewed the many medications that are often used and why some may not be successful in the treatment of ET.

For more information about the Froedtert and Medical College of Wisconsin Neurosciences Center go to: http://www.froedtert.com/SpecialtyAreas/ParkinsonsMovementDisorders/

 

 

 

 

Milwaukee Wisconsin here we come!

Hello Milwaukee and surrounding areas!

We will be facilitating another free ET education event/seminar on August 10 in Milwaukee. Come join us as we get together with the ET community to learn more about the diagnosis process and treatments available from Drs. Karen Blindauer and Peter Pahapill of the Medical College of Wisconsin. Follow this link www.essentialtremor.org/seminars  to register online or call toll-free at 888-387-3667. We look forward to seeing you there!

Where Has My Button Been?

Omaha 2 WHMBBHello Everyone!

We had so much fun at the Omaha Education Seminar and we all learned a lot from Drs. Torres-Russotto and Follett. We want to give both of them a huge thank you for sharing their time and expertise about ET. To learn more about the Movement Disorders Center at the University of Nebraska in Omaha go to http://www.unmc.edu/neurologicalsciences/movement_disorders.htm.Omaha Event WHMBB

Please join us in Irvine, CA for the upcoming event on Saturday, April 27. You can learn more at http://www.essentialtremor.org/Seminars. I would love to meet and share in the experience with you.