Posted - May 2008 in HSPRF News
The Berlin Research Symposium was a one day event held on April 11, 2008 in Magdeburg, Germany and entitled ”Hereditary Neurodegeneration – Mechanisms, Genes and Phenotypes". This was an event of the Tom Wahlig-Foundation:
"To put researchers in touch with each other….. and to do everything possible to find a cure for the illness in the long term."
The symposium was scheduled to coincide with the three day German Neurological Congress which was also held in Magdeburg.
There were about 60 participants, mostly researchers from Germany, USA, Italy, Ireland Scotland and Denmark. Patient representatives came from places including Germany, USA, Norway, Spain and the UK.
Here are some highlights:
- Dr. Rebecca Schule at Tubingen, Germany is working on a Gene Chip that will test for 15 different HSP types and is expected to be available this summer.
- Dr. Elena Rugarli of the University of Milan, widely considered to be one of the leading HSP researchers in the world, made a presentation entitled "Mechanics of axonal degeneration in HSP". She discussed her research with SPG7 mice and how she was able to correct their condition.
- A researcher from California, Dr. William Saxton concluded his presentation titled "Kinesin-1, Kinesin-3, and fast transport of axonal organelles in Drosophila motor neurons" with something he said he’d just learned. He acknowledged the difference between patients’ focus and desire for a cure and the main focus of research being on the understanding of the disease on the genetic level.
- The German HSP patient group is testing an electronic device (3 month test period) from King Fisher Healthcare of Belguim (http://www.kfhealth.com). Tests should conclude mid-June.
- PTC-124, the drug that holds promise for correcting nonsense mutations in Duchenne Muscular Dystrophy, is in Stage 2 clinical trials – being administered to patients.
- The German HSP group now is the equivalent of a tax free nonprofit organization and they are turning attention toward fund raising.
- There is difficulty finding East European and Russian HSPers to bring them into our worldwide patient community. Translations of medical terminology can make finding HSP information and/or support groups through web searches very difficult.
Report by by Karen Johnson, SP Foundation, USA