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Read recent stories about ET in the news

Learn about Planned Giving to the IETF

Clinical Research - Ongoing/Recruiting
IETF Funded Research
Other ET Research Findings
ET Brain Repositories
Research Program Grant Application
Hope.
IETF empowers individuals to regain control of their lives, by providing educational information, treatment options and coping skills.
 
Awareness.
IETF actively advocates for greater ET awareness and education at every level—from health care providers to government officials.
 
Research.
IETF funds scientific research to find more effective treatments and a cure for ET.
 
Support.
IETF has support groups across the globe to provide inspiration and fellowship among those living with ET.
 
 
A single voice is seldom heard, but a thousand voices shake the world.
ET Brain Repositories

 
 
Brain Bank Repository, Columbia University,
New York City, New York

What causes ET is currently a question with no known answer. Brain donation (also called postmortem examination or autopsy) is the only way to find the answers to this question. With these answers, better treatments can be developed and a cure can be found.

Medical researchers at Columbia University, with the help of the IETF, maintain a centralized brain bank to serve the ET community. This will enable doctors to begin to actively study what happens in the brains of people with ET. Unfortunately, there is a severe shortage of brain tissue donations from people who had ET during life.

If you are interested in helping find the causes of ET, and want to leave a medical legacy for future generations, please call 212.305.8513 or email
tremor@columbia.edu, and you will be sent an information packet on brain donation. For more information visit www.essentialtremor.us.

Above, right: The Purkinje cells, in a part of the brain called the cerebellum, are one of the brain areas that the Columbia University team of ETresearchers are actively studying. These and other brain cells may hold the clues to the cause of ET.


Five year update:

According to Elan D. Louis, MD, MSC, The ET Centralized Brain Repository at Columbia University, New York City, NY, has received renewed National Institutes of Health (NIH) funding for the next five years.

"Thanks to a core and highly committed group of individuals with ET who have donated their brains during the past five years, the Essential Tremor Centralized Brain Repository (ETCBR) has made tremendous strides. We have localized where the problems are occurring in the ET brain and are studying these problems with greater precision.

For the next five years, we
will be narrowing our search and will focus on donors age 70 and older. Of course, we are happy to talk with any potential donors, regardless of age, and establish contact, as future investigations might very well require their assistance. Also, we will continue to take ET brains on an emergency basis (at the time of death) as we wish to remain a valuable resource for ET patients and their families."
 
Above, right: Elan Louis, MD, medical researcher at Columbia University,is studying the microscopic changes in the brain of an ET patient.
 
 
National DBS Brain Tissue Network, University of Florida, Gainesville, Florida
 
If you have had DBS surgery for ET, and want to arrange for brain postmortem tissue for research, contact:

Annie Smith-Bova
asmithbova@neurology.ufl.edu
352.273.5611

 

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