Executive Director Update

On November 15, I returned to the National Institutes of Health (NIH). I have been there a number of times before: 1) to participate in the trial studying One Octanol, 2) to attend a conference on how non-profit organizations, involved in advocating for those with neurological disorders, can better collaborate with the National Institute for Neurological Disorders & Stroke (NINDS), 3) to participate in a trial to determine if there are any adverse effects on the rest of the body of Octanoic acid, 4) to participate in a trial to determine why people with ET frequently use two hands when holding something, and 5) to participate in a trial to determine the effects of alcohol on ET.

NINDS is well run, and the staff is both friendly & helpful. If you ever have an opportunity to participate in a trial there, please do so. You will find it to be a rewarding experience in more ways than one. As I have frequently said, taxpayers are definetly getting their money’s worth from what is being done at NINDS.

My visit on November 15 started with Dr. Dietrich Haubenberger testing my Essential Tremor. He used a scale that has recently been improved by a task force. The task force was created by the Movement Disorder Society to get a better understanding of Essential Tremor.

Next I participated in a trial of a new mouse developed by an employee of NINDS. Dr Haubenberger administered the test.

Finally, Dr Haubenberger and I discussed the current situation with Essential Tremor. He is in an ideal position to provide a good perspective. He works part time at NINDS. He is in the Neurology Department at the University of Vienna. He is also on the aforementioned task force. Being in Europe, he is close to what is happening there. Much is being done in countries like Spain & Italy as well as the rest of Europe.

In our discussion, he repeated what I am often hearing that there is no one Essential Tremor. Each patient must be treated individually based on their symptoms. He also said that he felt that NINDS would restart the Octanoic Acid study sometime in the future.

Peter Muller
Executive Director

Caleb October 2012 Update


On October 18, 2012, Caleb’s Mom met with Caleb’s Language Therapist and the Computer Access Facilitator for the Special School District. The Facilitator also has Essential Tremor which made her more aware of the challenges that Caleb deals with on a day to day basis.  After discussing Caleb’s needs, it was decided to get him a Fusion.  A Fusion is a small, less than four (4) pounds, word processor with a keyboard that will allow Caleb to type and store notes and assignments. He will be allowed to take the Fusion home to use it to do his homework, which can be printed out by a printer at school.

They set a date to meet at school on October 29th. The meeting will be to teach Caleb, his Mom and his Teachers how the Fusion works. This will be a giant step for Caleb.

Moving ahead to October 29th. When they met, they found that the Facilitator had a surprise for them. In addition to the Fusion, she brought an updated version of it, the Forte’, which is even lighter weight than the Fusion. Caleb will be the first one to use the Forte’. When Caleb came in from his class, the Facilitator showed him, his mom and his teacher how to use the Forte’. There is also a set of head phones, and he can use a flash drive to save work he has done on the Forte’. The Forte’ is basically a miniature word processor, that can also talk back to him so that he knows he has typed in the correct information. It is also equipped with spell check, and a carrying case.

Caleb is pleased and happy with his Forte’.  He can keep up with things in class without so much stress and finish his day without being so tired.

Mary J Fitzpatrick
Support Group Leader
St. Louis, Missouri

Fusion web site

Caleb has entered the seventh grade…..

Caleb Eaton

Essential Tremor Meeting Saint Louis, MO