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Focus on ET Patient Advocacy Groups – HopeNET, A Guiding Light

By: Neil Adler
March 14, 2019

One day at lunch with an internist, Peter Muller had a Eureka moment. He had lived the last 33 years frustrated by not knowing why he could not control shaking in his arm, and suddenly he was given a clue. The internist told him that he may have Essential Tremor (ET). On a visit to a movement disorder specialist the potential diagnosis became a reality.

Peter’s experience led him to where he is today – the founder and Executive Director of HopeNET. The advocacy group’s mission is to make a difference in the lives of people suffering with ET by raising public awareness and supporting physicians to diagnose and treat ET.

When setting up HopeNET, one of Peter’s first steps was to put together a Medical Advisory Board of noteworthy physicians from the US, Canada, and UK who had extensive ET research experience. Their collaboration with HopeNET has helped the organization to develop ideas and programs to expand knowledge of ET for the public and physicians, as well as to select research projects for funding.

A HopeNET website is also available serving as a one-stop source of helpful knowledge. It includes medical information about ET, support group meetings, articles on treatment options, hosts a blog with enlightening stories about the impact of ET on everyday lives, and updates on research conducted globally.

HopeNET’s focus on supporting research has borne fruit for Peter on a personal level. He became aware of a treatment for ET with a technology called MR-Guided focused ultrasound. The procedure is an incisionless surgery that has been shown in a clinical study to immediately and effectively improve tremor for ET patients who meet certain requirements.1

While there were risks with the surgery, Peter felt it was his responsibility, as the Executive Director of HopeNET, to take a leadership role in the ET community and have the surgery. He knew his experience provided researchers with a chance to learn better how to treat the disorder, and this was his primary motivation.

The researchers conducting this study believe ET is much more prevalent than currently realized in young adults. HopeNET will publicize these results so that people are more aware of the broad impact of ET on the community.

While there are many lingering questions about the causes of essential tremor, it is encouraging to know there are people like Peter Muller and organizations such as HopeNET whose focus is to help grow awareness for the millions of people living with the condition.

To learn more about HopeNET and how you can be a part of the family, please visit https://thehopenet.org.

1https://www.insightec.com/media/31393/exablateneuroinformationforprescribers0usa.pdf 

Disclaimer: This testimonial may not be representative of all patient outcomes.

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