December 11, 2019

Dystonia Patient Leaders Discuss Importance of Research and the Samuel Belzberg 6th International Dystonia Symposium

On June 4-6, 2020 the Samuel Belzberg 6th International Dystonia Symposium (IDS6) will take place in Dublin, Ireland.  This Symposium represents the latest chapter in a definitive series of international dystonia meetings held since 1975 to bring together experts to present and discuss the latest information on dystonia. The Symposium is being organized by the Dystonia Medical Foundation and Dystonia Europe, the leading groups in the United States and Europe dedicated to funding dystonia research and improving the lives of those affected.

The Symposium is named in honor of Sam Belzberg, co-Founder of the Dystonia Medical Research Foundation (DMRF), who passed away in 2018.  Sam founded the DMRF in 1976 with his wife Frances, shortly after their daughter was diagnosed with dystonia and he was relentless in his drive to find a cure and to provide services for families, like his, whose lives were upended by the disorder.

The Samuel Belzberg 6th International Dystonia Symposium is meaningful to different groups of people for variety of reasons.  For researchers and clinicians it is a venue to network, share data and exchange ideas, engage in discussion and keep research momentum moving forward.   For patients and their loved ones whose lives are touched by dystonia, the outcomes create a hopeful path forward to better understanding and improved treatments, and, someday a cure.

Below is an interview with Merete Avery, former President of Dystonia Europe and Art Kessler, President of the Dystonia Medical Research Foundation.  They provide important perspectives as patients and leaders on how advances in research have improved their daily lives and why the 6thInternational Dystonia Symposium is important for the dystonia community.

How long have you been with Dystonia Europe/DMRF and why did you get involved?

Merete: I have been with Dystonia Europe for almost 6 years. Before that I was the Chairwoman of the National Norwegian Dystonia Association, which is a member organisation of Dystonia Europe. I had been to a few Dystonia Europe yearly conferences and I was very impressed by their work as an umbrella organisation for the national dystonia groups in Europe.  I believe that the importance of working together across borders is invaluable to achieve our goals for more research, better quality of life for people with dystonia, access to treatment and early diagnosis, and eventually a cure.

Art: The DMRF has been an integral part of my family since I was about 12 years old.  That was when my parents became involved, shortly after my diagnosis of early-onset DYT1 dystonia.  We became involved with the DMRF because it was the best way to learn about and support the cutting edge in Dystonia research.   When I was first diagnosed with Dystonia in my early teens, my parents also wanted to meet and talk to others who were living with this disease.  The DMRF became our support network.  When I was in my 20’s I joined the DMRF Board of Directors as head of the Junior Board and then later became VP of Science, and am currently the President.

As a dystonia patient, how has research impacted your life?

Merete: Research is very important.  When I was diagnosed with Cervical Dystonia, I read a lot on dystonia and research of dystonia, other movement disorder and research of the brain in general. The research, from before I was diagnosed, led to treatments like botulinum toxin, oral medication, DBS and more.  I have received botulinum toxin every 4 months for the last 12 years, which has improved my quality of life tremendously. It enables me to continue to work, although less than before I had dystonia.
Now I can now again enjoy most of the things that I used to do before. I always loved mountain hiking. Since I was very young, my sister and I went on wonderful hiking trips, walking or skiing with our parents. I can no longer go for very long walks, but I can still mountain hike and go for short ski trips. Some people must wait many years for the right diagnosis, seeing many doctors. This means late treatment, and for many not being able to work or participate in social life, and stigma just to name a few of the consequences. Dystonia, especially untreated, is often very painful, can diminish quality of life severely, and is often very misunderstood.

Art: Dystonia research has impacted my life in profound ways. The breakthrough discovery of the DYT1 gene paved the way for genetic testing to screen for carriers of the mutation.  Pre-implantation genetic diagnosis allowed my wife and I to conceive our two children to be free from the DYT1 mutation.  Not passing Dystonia on to my children was very important to me.  I have also benefited greatly from the development of Deep Brain Stimulation.  I had DBS in 2007 and today I live virtually symptom free.

How is a meeting like IDS6 important to you and other patients in the community?

Merete: The IDS6 meeting is important for patients, for scientists, medical professionals, and others in order to meet and share knowledge, and to build connections for future collaboration. Instead of scientists and researchers working separately in each country or continent, we need arenas where they can meet and share ideas. This is such an arena to network, learn and share and I believe that the outcome of this conference will lead to further achievements and increased knowledge of dystonia that will benefit patients. 

Art: The IDS6 brings together the best and the brightest minds in Dystonia research.   Whenever we get so many brilliant investigators in one place, progress always happens.  Collaboration, exchange of knowledge, and future planning is what moves Dystonia research forward and that is what this meeting is all about.  I am so excited to hear about what is new in Dystonia research from investigators all over the world and we at DMRF will look forward to sharing the highlights with the rest of the patient community.

If you could tell potential IDS6 attendees one thing, what would it be?

Merete: Many experts believe that dystonia is highly underdiagnosed, patients often see many doctors before they get the correct diagnosis and treatment. It is very important with more awareness and knowledge of the different types of dystonia and more knowledge of treatment. With awareness, and the right treatment the patient most often has great benefits. To researchers, medical professionals and patients, please attend if you have the opportunity.

Art: The Dystonia community appreciates your dedication to Dystonia research and all of your hard work.  We believe in the power of knowledge and are counting on you to learn from each other and continue to move the Dystonia field forward.

For more information about the Samuel Belzberg 6thInternational Dystonia Symposium, please visit