November 28, 2009 in Munich, Germany
Arranged by Professor Thomas Meitinger. Sponsored by Technical University.
NBIA-Symposium in Munich gives scientists idea-sharing forum
- By Angelika Klucken
A small gathering of European NBIA researchers on Nov. 28 led to an exchange of some big ideas at the Technical University (TU) of Munich, Germany.
They talked about the latest research regarding NBIA and the similarities between PKAN, a form of NBIA, and another disease, Neuroacanthocytosis (NA). NA specialist Professor Adrian Danek, a neurologist at the Ludwig-Maximillians University (LMU) in Munich, outlined the relationship between NBIA and NA. Both are neurological and are characterized by movement disorders. Scientists studying both diseases are just beginning to join forces to advance their research.
They also discussed “NBIA genes in health and disease” at the symposium arranged by Professor Thomas Meitinger, director of the Institute of Human Genetics at TU. He and his staff members, Dr. Monika Hartig and Dr. Holger Prokisch, have been working on NBIA genes for several years.
Along with them, Professor Ody Sibon from Groningern, The Netherlands, attended as well as Dr. Tomasz Kmiec, a neuropediatrician at the Memorial Children’s Health Institute in Warsaw, Poland, who takes care of a number of NBIA patients.
Lectures and discussion focused not only on clinical phenotypes of NBIA and their genotypes, but on the underlying mechanics of disease as examined in a Drosophila model of PKAN by Ody Sibon.
There also was an intense exchange about a new NBIA patient registry in Munich that will be launched soon as one part of a larger patient registry for mitochondrial diseases.
The interpretation of brain MRIs for diagnostic purposes attracted the special interest of the attending neurologists who take care of NBIA patients, Professor Dr. Thomas Klopstock (LMU), Dr. Rudiger Ilg and Dr. Malte Claussen (TU). A view on neuropsychiatric features was given by Dr. Kevin Rostasy, a neuropediatrician at the University Children’s Hospital in Innsbruck, Austria.
As chairwoman of the German NBIA patient organization Hoffnungsbaum e.V., I contributed a lecture about “The Role of Patient Organizations in NBIA Research.”
The meeting will be followed by a family conference in Germany in June focusing on medical care for our NBIA patients. We hope some of the same doctors and researchers will be present as they will be in October when the National Institutes of Health hosts a scientific workshop in Bethesda, Md., that will feature NBIA and NA researchers from around the world.
Overall, our scientific symposium was an inspiring exchange of information and another step forward for NBIA as it continues to gain momentum internationally.
Some participants of the NBIA-symposium in Munich: front row (from the left): Dr. Tomasz Kmiec (Poland), Prof. Dr. Thomas Meitinger, Dr. Monika Hartig (Germany), Prof. Dr. Ody Sibon (Netherlands), back row (from the left): Dr. Holger Prokisch, Dr. Rüdiger Ilg, Prof. Dr. Adrian Danek, Dr. Konrad Oexle, Dr. Arcangela Iuso, Dr. Tobias Haack (Germany)