Please note this meeting starts at 3pm, not the regular 10:30am time. Dr. Dietrich Haubenberger of NIH will speak about the current status of ET research. He has spoken previously to our group. To say he is an expert on the subject is an understatement. You won’t want to miss this meeting!
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.
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.
In a little more than a month, NIH will host the Essential Tremor Conference – bringing together experts on ET from across the country as well as some from other parts of the world. In speaking individually with members of HopeNET’s medical advisory board, they are optimistic. The staff from the National Institute of Neurological Disorders & Stroke has done a good job of organizing the conference. They have made an effort to include some researchers that are outside the usual ET research community. They have also made an effort to include younger people. In my conversations with the staff, I get the sense that they want this conference to be a success that ultimately benefits all of us with ET.
HopeNET is playing a role in several different ways in the conference. I will be there attending the sessions. I look forward to sharing with you what I learn. If you have any ideas that you’d like to share with me prior to the conference, please let me know.
Dr. Dietrich Haubenberger, the Director of the Clinical Trials Unit of the National Institute of Neurological Disorders & Stroke’s Intramural Research Program, made the following presentation to both the Columbia and Silver Spring groups. He was accompanied by members of his staff – a neurologist (in Columbia from Thailand & in Silver Spring from Romania) and a neuroscientist in both situations. By the way, Dr. Haubenberger is from Austria. After the presentation, members of the support groups had the opportunity to ask questions of Dr. Haubenberger and his staff.
For two days in late September, the National Institute of Neurological Disorders and Stroke, NINDS, on the NIH campus held its eighth Nonprofit Forum called “Progress Through Partnership,” which provided a wonderful way for nonprofits who support and educate about their specific medical condition to learn how clinical and translational research at NINDS works. Forty-three health organizations or patient foundations were there in attendance.
Two things were notable about this forum, one being that Dr. Story Landis, Director of NINDS gave remarks along with others from NINDS in which she as well as the others made it clear that they want a closer relationship with the patient foundations and nonprofit organizations. With a closer relationship, they can conduct more effective research as a result of understanding patients’ needs, and it makes it easier to recruit patients. Also of note was that the forum panel consisted of patient advocates who had created nonprofits/ foundations that in the not-so-distant past partnered with NIH in finding treatments. They were there to report on their accomplishments to us. What encouragement! A few were foundations for rare diseases that affect between 2200 to 1 million people, which makes it more remarkable that they were able to make progress and see pharmaceutical products come to market.
Panel speakers were generally people who either had a condition themselves or with family members who had it. The panel was impressive not because they had perfectly figured out how to work with NIH to make things happen but for their personal perseverance and accomplishments. In the process they got to know NIH clinical researchers and worked together with NIH to reach the mutual goal of stimulating research and seeking cures or clinical interventions. Outside of NINDS they made inroads through the use of lobbyists, created patient registries, raised research funds, sought grants, conducted their own surveys, and created or identified Centers of Excellence such as university medical centers that have been established to conduct research and provide the best care for patients with a particular condition.
One speaker described how their nonprofit that supports the rare disease Ataxia went from having zero pharmaceuticals to having many in part because they created a patient registry that could easily and very quickly help the pharma companies get patients for a study. This information should bring hope to those with Essential Tremor since it is not a rare condition but one that affects 7 million potential customers of a medication.