ET Studies

Your Donations Sought to Support Essential Tremor Projects

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For the past two years. HopeNET has not actively solicited donations. We have been able to do so because we are an all volunteer non-profit.

However circumstances have changed due primarily to two projects:

* A formal study of Essential Tremor and balance and gait. There has been very little research on this issue even though it is a critical issue facing many who have ET. The study is tentatively scheduled to begin this fall. It will be conducted by Janice Sallitt, PT, DPT, NCS. She specializes in Orthopedic & Neuro PT. The study will center on HopeNET’s Columbia, Maryland ET support group.

* In an attempt to increase awareness of Essential Tremor, Mary Cae Asay is going to produce a play about Katherine Hepburn. Because of Mary Cae’s ET, she can make her voice sound identical to Hepburn’s.

More details will follow. These are very exciting times for HopeNET. Please continue to follow our Facebook and Blog as HopeNET continues to take active steps aimed at improving the lives of those with Essential Tremor.

Your donation will be greatly appreciated.

Peter

Tai Chi for Essential Tremor Class Started

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Dr. Sean Vasaitis is a professor at the University of Maryland Eastern Shore. He is a young man who has had Essential Tremor since he was a child. He found that Tai Chi was an effective treatment for his ET. He consequently undertook an extensive program to learn Tai Chi. This involved a number of trips including this past winter to Northwest China to learn from the real experts of Tai Chi.

He is conducting a formal study of Tai Chi as a treatment of ET. He is using HopeNET’s Silver Spring ET support group as a test group. Yesterday, April 28, was the first class. It was conducted at Leisure World Maryland. Renee, a faithful member of the group, sent me this message below.

If you are interested in participating, please let me know.

— Peter

 

ReneesNote

Big McGill University Study Underway – Now Recruiting Those With Essential Tremor

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One of our Falls Church, Virginia ET support group members has signed up for and made us aware of this very large genetics study in Montreal, Quebec, Canada. It comes on the heels of an exciting large genome-wide association study (GWAS) conducted by researchers at Montreal Neurological Institute and Hospital and Kiel University in Germany and written about in Brain, as detailed in the article. Click article link for more details …

https://www.mcgill.ca/channels/news/essential-tremor-sufferers-needed-groundbreaking-study-263594

Dr. Dietrich Haubenberger of NINDS/NIH Gives Presentation On ET Outlook

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title-page-et2016-presentationWhen we founded HopeNET 5 years ago, we felt that the thing that the ET community needed most at that time was HOPE – hence the name. In the meantime, we have strived hard to bring some hope to all with ET. Accordingly, HopeNET played a key role in having the ET conference at NIH in May 2015. Since that conference, there has been a big increase on the part of industry in developing new treatments for ET. Dr. Dietrich Haubenberger of NIH is probably in the best position to know what is going on with ET. He came to the Falls Church, Virginia ET support group on October 14th and made the attached presentation, Essential Tremor 2016: A look into the pipeline. There has never been a better time than right now for hope – for all of us in the ET community.

— Peter

Dr. Dietrich Haubenberger of NINDS/NIH Gives Presentation On ET Outlook

by

title-page-et2016-presentationWhen we founded HopeNET 5 years ago, we felt that the thing that the ET community needed most at that time was HOPE – hence the name. In the meantime, we have strived hard to bring some hope to all with ET. Accordingly, HopeNET played a key role in having the ET conference at NIH in May 2015. Since that conference, there has been a big increase on the part of industry in developing new treatments for ET. Dr. Dietrich Haubenberger of NIH is probably in the best position to know what is going on with ET. He came to the Falls Church, Virginia ET support group on October 14th and made the attached presentation, Essential Tremor 2016: A look into the pipeline. There has never been a better time than right now for hope – for all of us in the ET community.

— Peter

Join Us for Essential Tremor Support Group Meetings This Week!

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support-group-clipart-2Plus Sign-Up NOW to be an ET Study Participant

The topic of this week’s Silver Spring and Columbia, Maryland meetings will be coping with essential tremor. People will have an opportunity to share what has worked for them. Discussion will also be on current sign-ups for a Tai Chi class that is part of a bigger essential tremor study that is getting ready to start. Interested participants do not need to attend the support group meeting but will need to meet next week with Dr. Sean Vasaitis who, in addition to being a pharmacologist at University of Maryland Eastern Shore, has a background in alternative medical approaches, essential tremor, and is a Tai Chi instructor.

The study will look at whether or not Tai Chi helps to alleviate ET symptoms. It consists of a Tai Chi class that will meet once a week for approximately 4-6 months at Leisure World in Silver Spring, MD. If you are interested in participating, Dr. Vasaitis is currently setting up times to meet with people individually at Leisure World the week of August 8-12th to do baseline screenings. Please contact him at tsvasaitis@umes.edu with your preferred screening date/time and put ET Tai Chi Study in the subject line. This study is open to all with essential tremor.

The Silver Spring, Maryland support group meets this Thursday morning (the first Thursday of each month) August 4th at 10:30 am at Leisure World’s ClubHouse I. Directions: Enter off of Georgia Avenue at the globe sculpture (between Bel-Pre Rd and Norbeck Rd). At the stop sign you’ll see ClubHouse I in front of you. Turn left onto Leisure World Blvd and turn right immediately into parking lot.

The Columbia, Maryland support group meets this Friday morning (the first Friday of each month) August 5th at 10am at The Wellness Center. Address: 10710 Charter Dr. Ste 100, Columbia, MD 21044.

See you there!

The Family Study of Essential Tremor

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Bar graphDr. Elan Louis and colleagues at Yale University along with Dr. Lorraine Clark at Columbia University have teamed together for an important research “FASET II”, to try to identify the genes that are responsible for ET. They are calling on the assistance of the ET community to help them complete this groundbreaking research, which at the moment is the largest NIH-funded project of its kind. The help of the ET community is vital.

Eligible families would comply with the following criteria:

  1. There are at least 3 affected family members and at least 2 unaffected family members. Each family has at least 5 individuals willing to participate.
  2. One person in your family has been diagnosed by a doctor as having ET (rather than dystonia or Parkinson’s disease, for example).
  3. Your tremor had started by the time you were 50 years old.
  4. Two of your affected relatives, are living and also do not have any accompanying dystonia or Parkinson’s disease. (they do not have to have an official diagnosis)
  5. You have at least two relatives that do not have any ET.
  6. You think you and your family members are willing to donate a blood sample, answer some questionnaires and undergo a videotaped neurological exam during a home visit that will take place in each of your homes. Each interview will last approximate 2-3 hours.
  7. This is a nationwide study, in which the researchers will travel to meet with qualified participants individually. There are no costs associated with your participation and we work around your available schedule. If you are interested, call 203.737.1013 or email tremorgenetics@yale.edu