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Welcome to Tremor Action Network

Someone you know has Tremor


Well known people with tremor include: statesman Samuel Adams, sculptor Magnus Berg, politician Oliver Cromwell, actress Katharine Hepburn, and playwright Eugene O'Neill.

Leonardo da Vinci is well known for painting the Mona Lisa and The Last Supper, but as a scientist made an important contribution to neuroscience with his notebooks on different tremors. da Vinci noted:

  • "How nerves sometimes operate by themselves without any command from other functioning or soul. This is clearly apparent for you will see paralytics and those who are shivering and benumbed by cold move their trembling parts such as their head and hands without permission of soul, the soul with all its forces can't prevent them from trembling."

     

Leonardo passed away in 1519, and though essential tremor and tremor related neurological movement disorders afflicting millions of children, adults, and next generations have been recognized for centuries, little is known about the etiology.

TAN works to inform the public, policy makers, healthcare professionals, and the media about the quality of life challenges faced by those with movement disorders. Essential tremor and tremor related neurological movement disorders cause abnormal involuntary muscle movements and contractions that affect major life activities.

Tremor Action Network provides boutique services, support and guidance to patients, family members, and caregivers through information, resources, and volunteer advocates.

TAN is Shaking the World to Find a Cure for essential tremor and tremor related neurological movement disorders in the following ways:

  • Diagnosis and treatment options
  • Specialist referrals
  • Clinical trials and studies
  • Research news and updates
  • FAPE education rights and responsibilities
  • ADA disability rights
  • SSI and SSDI eligibility
  • Life with Movement Disorders videos
  • Spikes & Spasms newsletter

Tremor Action Network connects "the bench to the tremor patient" through innovative clinical trials, studies, therapeutic, diagnostic, biopharmaceutical and assistive technology products. TAN promotes research in an effort to help find the cause, treatment, and cure for essential tremor and tremor related neurological movement disorders.

Donations are welcome and are tax deductible.

You will find something new and interesting on essential tremor and tremor related neurological movement disorders each time you visit TAN.

  • Elan Louis, MD addresses "the essentials of essential tremor,"    perhaps the most common movement disorder, and certainly
    the most common tremor disorder.
    Video feedback: "Wonderful...very encouraging! Immediately shared
    the video with my daughter."


Essential Tremor Awareness Web Based Survey
Essential tremor (ET) is the most common movement disorder, yet the 2011 update of the 2005 American Academy of Neurology (AAN) guideline for the treatment of essential tremor does not include new recommendations. No new therapies highlight the need for essential tremor research.

Responses to the survey are a way that may help increase awareness of essential tremor and more research for new therapies. All responses will be kept absolutely confidential and will never be associated with any individual.

Everyone diagnosed with essential tremor is invited to take this survey.

Columbia University Essential Tremor Genetics Study

This tremor study will be looking for a genetic component that may contribute to essential tremor. Participants with 1st degree relatives have the most genes in common. If for example, you have a sibling with tremor who also has a child with tremor, the three of you as 1st degree relatives would be eligible for the study.

  • Study participant feedback: "Exceptionally well-designed study!"

NIH Clinical Center Research Studies

12-N-0024

Recruiting patients to test different doses of oral Octonaic Acid to treat essential tremor. Researchers are testing for the dose of octonaic acid that is most useful in suppressing the tremor.

10-N-0199
Recruiting patients for alcohol and TMS study. Researchers are searching for to what extent alcohol suppresses tremor, and what areas of the brain respond to relief from drinking alcohol.

MR-guided Focused Ultrasound Study
This study is the "first in the world" clinical trial for the treatment of essential tremor (ET), involving a noninvasive deep brain therapy that could become the alternative  to stereotactic thalamotomy or deep brain stimulation. Many essential tremor patients forego invasive surgical procedures, opting to live with progressive symptoms that are hard to treat or unmanageable with medications.

View interview with the world's 5th essential tremor patient treated with MR-guided focused ultrasound.


For further patient inquiries, please contact UVA Study Coordinator Johanna Loomba at (434) 924-5859 or email JJL4D@hscmail.mcc.virginia.edu.




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