Website Edition: June/July 2011

5th International Dystonia Symposium – It's Not What You Think!

By Jan K. Teller, PhD, Science Officer of the Dystonia Medical Research Foundation and the 5th International Dystonia Symposium Scientific and Program Committee member

For a while, we thought it would never happen. We feared that dystonia, a rare disease, would be forever dwarfed by the 'big' neurological diseases, pushed aside, overlooked, and neglected; that research on dystonia was too scattered across the globe, across different institutions, that there was not enough interest, not enough 'momentum'. But we were wrong. Perhaps because dystonia patients everywhere are so inquisitive, stubborn, and persistent. Perhaps because dystonia is so intriguing, so tough to decipher, so revealing. Perhaps because we realized that only by joining forces and coalescing the field we can achieve something significant.

Our friends and colleagues at the European Dystonia Federation (EDF) led the way and inspired us. We met, we talked, we decided. We joined forces and the 5th International Dystonia Symposium will happen soon (more information can be found at: www.internationaldystoniasymposium.org/). Come to Barcelona on October 20-22, 2011, to see for yourself. It will not be an ordinary meeting. Developed over months by several dozen people from more than a dozen countries it will be an overdue continuation of the definitive international symposia on dystonia. It will be more than that, thanks to unprecedented progress and extraordinary engagement of clinicians, researchers, patients, and their friends. Dystonia deserves such a meeting.

We all continue to be amazed by the many different "faces" of dystonia while striving to deepen our knowledge about it. Academic centers and more and more pharmaceutical companies attempt to design and develop new drugs that would specifically target dystonia. Patient organizations like EDF, Dystonia Medical Research Foundation (DMRF), and many others continuously and tirelessly support research, advocate for dystonia, help and organize patients, and, yes, organize scientific meetings. What is important is that we begin to speak with one voice, which is neither obvious nor easy; we live in different parts of the world, are constrained by our unique health care systems, research funding rules, culture, and customs.

Yet, once in a while big initiatives break such barriers. In late 2009 the United States National Institutes of Health awarded a five-year grant to form the Dystonia Coalition: "a collaboration of medical researchers and patient advocacy groups that is working to advance the pace of clinical and translational research in the dystonias to find better treatments and a cure" (more information can be found at: http://rarediseasesnetwork.epi.usf.edu/dystonia). The Coalition has already established a network of more than 40 dystonia clinical centers across the globe. We place high hopes on the Coalition. Their presence in Barcelona will be visible in every session of the symposium.

The meeting will not be just presentations and lectures; it will offer a comprehensive platform for discussion, exchange of ideas, and a unique opportunity to strengthen or set up collaborations. The program is packed with exciting presentations and provocative topics. From general and special clinical aspects, including the definition and classification of the dystonias, functional anatomy of dystonia, physiology and pathophysiology, genetics and molecular biology, and emerging issues in therapy to numerous 'challenge topics' tackling the most controversial issues in research and clinical practice (more information can be found at: www.internationaldystoniasymposium.org/programa.pdf).

The symposium will highlight the most novel experimental and clinical research but it will also emphasize that it is time to form a unified front to collaborate, share, communicate, and cooperate. Only together we can find a cure for dystonia.

We hope to see you in Barcelona at the 5th International Dystonia Symposium – it will be more than you expect.

Jan TellerAbout Jan Teller, MA, PhD
Jan Teller, MA, PhD was raised and educated in Poland receiving graduate degrees in biological sciences and clinical psychology from Adam Mickiewicz University in Poznan. He held faculty and staff positions at several universities in Poland, England and the United States before becoming the first ever DMRF Science Officer in 2005. His research background includes biochemistry, enzymology, and neuroscience. He has published seminal papers on enzyme-enzyme interaction and biochemistry of Alzheimer's disease. At DMRF he oversees the Foundation's Science Program.