Month: May 2015

Update – Joint Essential Tremor Support Group, June 6, 2015

Essential Tremor (ET) affects 7 million Americans.  It is often confused with Parkinson’s disease.  If you, a family member, or a friend have ET, you are invited to attend a free meeting sponsored by HopeNET, an all-volunteer, non-profit organization.

This joint meeting of all the HopeNET support groups in Virginia & Maryland will be held on June 6 from 10am until 12:30pm at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910.

There will be two guest speakers. Their names, organizations, and topics are – Dr. Kathleen Maguire-Zeiss, Georgetown Univ., ET & the circuitry of the brain and Dr. T. Sean Vasaitis, Univ. of Maryland Eastern Shore, Essential Tremor & Tai Chi.   Peter Muller will also give a brief summary of the “Essential Knowledge gaps in the field of ET” Conference that was held at NIH on May 11-12.

You will need to register for this. To do so, please call Peter Muller at 703-543-8131 or one of the contact people at each group – Doris Mapes, Lisa Gannon, Mary Thomas, Barbara McCarthy or Prudy Bradley.

Essential Knowledge Gaps in the field of Essential Tremor Conference

The conference entitled Essential Knowledge Gaps in the field of Essential Tremor was held on May 11-12, 2015. It was broken into 5 sessions – (1) Phenomenology & Phenotypes, (2) What can we learn from available therapies & what do we need to implement clinical trials and advance clinical research in ET, (3) Physiology of Essential Tremor, (4) Pathology, and (5) Genetics.

For each of the above discussion points, an expert in the respective field made a presentation regarding the topic. The discussion was then open to all of the participants. This was followed by a summary of what had been discussed. As one who has Essential Tremor and is not a doctor, I was impressed by how it was conducted and the points that were made.

I am optimistic. There are big challenges ahead – not the least is – we need a better understanding of what Essential Tremor is. The various working groups will now take their respective summaries and put together a more specific plan for moving forward.

NINDS did a good job with the conference. I am confident that they will continue to play a constructive role in ensuring that follow up occurs.

Peter