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.

Raising Awareness About ET and the IETF

Patrick McCartney
Executive Director

I recently attended the 70th American Academy of Neurology (AAN) Conference in Los Angeles, CA along with our board president Dr. Kelly Lyons. This annual conference offered more than 300 top-quality programs covering the spectrum of neurology; exciting networking opportunities; and expanded Experiential Learning Areas that allow attendees to interact, explore, and learn outside of the classroom. This year’s announced attendance was more than 14,000.

AAN offers non-profits free booth space and the IETF has exhibited at the conference for several years. This is a great opportunity for us to raise awareness and educate doctors, medical students, and pharmaceutical and medical device companies about the resources available on essential tremor from the IETF.

I’m always amazed at how many doctors and other exhibitors I talk with at these conference who either have ET or have family members or friends with ET. Talking to these people affirms why we attend these type of conferences because most of them have never heard of the IETF and they’re excited to hear there is a reliable source for accurate and objective information on ET.

Making Connections 
This conference also gave me a chance to catch up with several of our IETF Medical Advisory Board members. I enjoyed seeing Dr. Elan Louis from Yale University School of Medicine, Dr. Mark Hallett, a senior investigator with NINDS and Dr. Keith Coffman from Children’s Mercy Hospital right here in our backyard in Kansas City.

I also had the opportunity to meet with some of our partners who work (or are working on) a variety of ET specific medications or medical devices for the ET community. I was able to spend time with folks from Liftware, Abbott, Cavion Pharmaceutical, Boston Scientific and Medtronic. I also met with one of our newest partners the Alliance for Patient Access.

Another Advocacy Opportunity
In October, we will attend the American Academy of Family Physicians Annual Meeting in New Orleans. We think it’s important to attend this meeting to raise awareness with family physicians who quite often are the first doctors to diagnose ET in many patients. Again, almost all the doctors I talk with at this meeting see ET patients, but have no idea the IETF exists.

I know sometimes it seems like there is nothing new on the horizon to help ET patients. After attending AAN I’m excited about the new projects being worked on including ET specific medications, improvements in DBS and Focused Ultrasound treatments, and new medical devices that will help improve the quality of life for ET patients around the world.

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

Introducing a new, free e-book from ET experts

Ebook-Cover-2014-for-webThe IETF is excited to offer the new, e-book, Essential Tremor: What the Experts Say, exclusively available to annual donors who make a contribution of $30 or more. Through this comprehensive collection of informative articles, you’ll gain insight and a better understanding of essential tremor through the knowledge of the world’s finest movement disorders specialists and experts.

Now in its third edition, the e-book features over 80 articles filled with invaluable information for you to reference time and time again. The e-book is compatible with any e-Reader as well as available for download in PDF format.

The IETF thanks the many physicians, health care providers, and other individuals that contributed time and effort to make these articles possible. These people have contributed greatly to the success of the IETF over the years.

Make your annual donation today and receive the new, e-book, Essential Tremor: What the Experts Say as our way of saying thank you for your contribution.

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!

Head Snap – Promising New Finding

finger test

Scientists recently released a study that could be a useful aid in diagnosing essential tremor.

Researchers at Columbia University found 20% of essential tremor patients in the study exhibited a head snap, which is a jerking motion of the head while engaging in the finger-nose-finger maneuver. In this maneuver, people touch their nose with their finger and then try to touch the examiner’s finger in an alternating fashion to test for tremor.

The study also documented the prevalence of head snap to Parkinson’s disease patients, and they found that none of these patients exhibited head snap.

Because so many ET patients are misdiagnosed (approximately 30-50%), many as having Parkinson’s, researchers hope attention to head snap will lead to more accurate diagnosis of essential tremor.

Read more here.

 

Joy Schaaf in the News!

Recently we got this great news from one of our most supportive voices and ardent supporter – Joy Schaaf. We congratulate Joy on her great video and all the support she has provided in the last two years. For more about Joy visit, http://www.essentialtremor.org/read.asp?docid=907 and her story appears 3/4 the way down the page.

Dear IETF and Friends,
Joy Schaaf is at it again. Spreading awareness through a skit. Ohio has a 4-H Health and Safety Skit Competition. Joy and her sister Hope wrote a skit about her essential tremors. They won at county level and then again at regional level. Tomorrow they will be attending the Ohio State Fair for the final round in the competition. Last year it was taped and put on the internet. We are hoping it will be taped again. If she wins and if it is taped, we will let you know where you can watch it. Information from your website was very helpful in the writing of this skit and all information obtained was sited correctly.
Sincerely,
Teresa Schaaf

They didn’t win, but they did an excellent job! You can watch the video online at the following link: http://www.ohiochannel.org/medialibrary/Media.aspx?fileId=139803. The skit “Essential Tremors” is halfway through all the videos at 47:45 min. Check it out!
Teresa

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/

 

 

 

 

July DC Report

In July, Tom Bruderle, IETF Legislative Liaison, and Catherine Rice, IETF Executive Director participated in the July 22 NIH BRAIN Initiative Webinar designed to engage the patient advocacy community in the research pursuant to President Obama’s commitment earlier this year. There were about 100 people on the call with a second event anticipated sometime in the fall. Currently, NIH is developing specific scientific goals for the Initiative and has a website up and running at http://www.nih.gov/science/brain/index.htm where you can follow the progress.

Not much has occurred this month in the House and Senate. Tom continues to increase awareness and educate our congressional representatives about essential tremor. If you have a congressional representative or senator in DC that you would like for Tom to visit, please send us an email at info@essentialtremor.org.