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.

The Determination to Keep Fighting the Challenges of ET

Each semester, the International Essential Tremor Foundation presents four scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our spring 2018 scholarship recipients.

By Brogan Speraw,
Freshman at Ohio University,
Athens, OH

As I enter my freshman year of college, I’m anxious for the trails ahead. What classes to take, what will finals be like, how different will the classroom setting be from the one I’ve grown accustomed to. But one tends to worry me more than the others: how will my tremors affect my college life?

My tremors make my penmanship very poor, and my fine motor skills suffer as well. This has caused many challenges in my life, including struggling in art classes due to my inability to draw effectively. In the past, my classmates would ridicule me for my shaking hands by making comments about how I shake or how I must be nervous, or how I could be used as a seismometer (an earthquake detector). But, being the person I am, I have learned to take the ridicule and laugh with them as well, often times joining in and having a better time because of it. I have had to learn how to explain the shaking of my hands. With age, I have also learned not to be embarrassed, but proud of the strong person I have become because of my condition.

Normal everyday tasks for most tend to be a challenge for me, one of them being eating in public. I tend to choose what I eat in public very carefully. As I’ve gotten older, I’ve also learned how to live with eating and tremors significantly better, more often than not, ordering foods that I know will challenge me simply for the challenge itself.

I have a 504 plan that will follow me throughout college and the workforce. My disability will never go away, but I haven’t allowed this disability to hold me back. My neurologist predicted that I wouldn’t be able to write by my freshman year of high school, but I continued to write daily up until my junior year. It was during my junior year that I had to start doing a majority of my work by typing on a laptop. For my tests with answer choices that need bubbled-in, the school provides me with a scribe. Although this disability is a daily struggle, I have maintained a GPA of 3.967.

During college, I will continue to refuse to allow my disability to hold me back. It may be a challenge, but it is a challenge I intend to take on wholeheartedly, doing my best to make sure I succeed in all my academic endeavors.

I have been blessed with the determination to keep fighting the challenges that have been put in front of me, therefore being able to complete whatever I put my mind to.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.