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.

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