When 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.
When 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.
Shown is Peter Muller beginning the joint Essential Tremor support group meeting at Holy Cross Hospital on June 6, 2015.*
The June 6th Essential Tremor support group meeting at Holy Cross Hospital in Silver Spring, MD brought together close to 50 members of area Essential Tremor support groups from places like Silver Spring and Columbia, Maryland and Loudoun County and Falls Church, Virginia. There were two speakers preceded by remarks by Peter Muller from HopeNet. Muller informed the audience about what happened last month at a conference HopeNet worked to arrange, held at the National Institute of Neurological Disorders and Stroke (NINDS), a part of NIH. Forty neurologists and ET researchers attended the conference. What they agreed on is that treatment for ET is not possible if they do not know what the condition is. ET presents differently in each person, with varying symptoms such as hand tremors, head tremors, voice tremors, etc., and there can be overlap with other conditions such as Dystonia. These experts decided it would be beneficial to use hand tremors as the focal point to pinpoint what ET is, which suggests there will be upcoming studies.
Moving on, the support group audience was fortunate to hear from Dr. Maguire-Zeiss of Georgetown University’s Department of Neurology who gave a brief overview of the mechanisms in the brain thought to be involved in ET such as the cerebellum, motor cortex and thalamus. There is a question about the role the inferior olive plays as well. Maguire-Zeiss focused on neurons and likened the movement of neurons in the brain to an (electric) circuit and pointed out that if there is a “hiccup in the loop,” that can lead to more body movement (as seen in ET) or less body movement (as seen in Parkinson’s Disease).
Another guest speaker was Dr. T. Sean Vasaitis, Professor of Pharmaceutical Sciences at University of MD, Eastern Shore, who has ET himself and is a practitioner and instructor of the Chen style of Tai Chi. Dr. Vasaitis spoke about body control and elaborated on the benefits of Tai Chi such as reducing stress, releasing tension, improved calm, sleep quality and other cognitive functions. He is exploring the idea of a study on the effects Tai Chi can have on ET patients and speculated that starting out there would be a suggested practice of Tai Chi 2-3 times per week.
HopeNet organized this support group meeting and continues to work toward helping people with ET. Another similar meeting of these support groups is likely to be planned for the fall season, and will again be open to other interested individuals.
Please check www.thehopenet.org for upcoming schedule and registration information.
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 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 noon at Holy Cross Hospital, 1500 Forest Glen Rd., Silver Spring, Md. 20910.
Our guest speaker will be Dr. Stan Anderson, a neurosurgeon at Johns Hopkins Hospital. His presentation will be on Essential Tremor & the circuitry of the brain and will occur less than a month after the conference at NIH on Essential Tremor in which this topic of ET & the brain circuitry will be one of the primary discussion points.
Information about HopeNET may be found at www.theHopeNET.org. 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
The University of Maryland in Baltimore is performing the MRI Focused Ultrasound procedure. Charlene Aldrich from the Department of Neurology there made a presentation about it on February 5 to the Silver Spring support group. Charlene did an outstanding job of interacting with the group. In the process, she made clear her empathy for them and her desire to really help. The attached is the slideshow she used.
While the FDA has yet to approve it. The results so far are very promising.
On September 12, 2013, Stephen Grill, M.D., Ph.D. and Fred Berko, Ph.D.,
visited the Headquarters of the National Security Agency at Fort Meade,
MD. The visit was at the invitation of Forrest Riddle, M.D., senior
physician in NSA’s Medical Center, a fully-accredited facility staffed by
four full-time physicians, more than 25 nurses, and additional medical
technicians, pharmacists, and support personnel.
Dr. Grill, a movement disorder specialist, presented an overview of the
history, symptoms, and treatments for three movement disorders: Essential
Tremor, Dystonia, and Parkinson’s Disease to more than 35 staff members of NSA’s medical center. This CME presentation was highly interactive and
informative, and was followed by Dr. Berko’s presentation on “the patient’s
viewpoint”.
It was heartwarming to the visitors to learn how NSA is a leader among
Federal government agencies in recruiting, and supplying accommodations as necessary to, persons with disabilities.
On September 12, 2013, Stephen Grill, M.D., Ph.D. and Fred Berko, Ph.D.,
visited the Headquarters of the National Security Agency at Fort Meade,
MD. The visit was at the invitation of Forrest Riddle, M.D., senior
physician in NSA’s Medical Center, a fully-accredited facility staffed by
four full-time physicians, more than 25 nurses, and additional medical
technicians, pharmacists, and support personnel.
Dr. Grill, a movement disorder specialist, presented an overview of the
history, symptoms, and treatments for three movement disorders: Essential
Tremor, Dystonia, and Parkinson’s Disease to more than 35 staff members of NSA’s medical center. This CME presentation was highly interactive and
informative, and was followed by Dr. Berko’s presentation on “the patient’s
viewpoint”.
It was heartwarming to the visitors to learn how NSA is a leader among
Federal government agencies in recruiting, and supplying accommodations as necessary to, persons with disabilities.
When 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.
