NCL- Congresses
National NCL- Congresses
Every year the NCL-Foundation organizes an NCL-congress in order to create a platform for scientific exchange where new collaborations can begin. The Foundation's goal is to coordinate, organize and collect new findings from international research. Furthermore, as the NCL-Foundation forges contacts between scientists, it functions as a center point for everyone involved with NCL. As Dr. Frank Stehr, scientific chief of the NCL-Foundation, states, “The existing knowledge must be joined to get a synergy-effect.”
JNCL Drug Discovery Course
Some of the leading NCL-laboratories have had very promising research approaches that are leaving the phase of basic research and moving on to the pre-clinical phase. In February 2011, in San Diego (USA), the NCL-Foundation and the Beyond Batten Disease Foundation arranged a course for scientists to support and speed up the next developmental steps.
20-25 NCL-scientists were able to attend the course: „5th Drug Discovery in Neurodegeneration: “An intensive course on translating research into drugs”. Directly afterward there was a one day conference about: “Drug discovery in JNCL”.
NCL- Congresses
9th NCL- Congress
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It is possible that juvenile NCL can be combated effectively with gene therapy. This concrete way of combating the disease, however, is not yet fully developed clinically.
Prof. Robert Steinfeld from the Universitiy Hospital Göttingen began with a clinical discussion about the different NCL-diseases and their symptoms.
Dr. David Begley (London) and Prof. Jörg Kreuter (Frankfurt) engrossed the audience with the topic „Overcoming the Blood-brain barrier.” Dr. David Begley gave an anatomic and molecular biological introduction and Prof. Jörg Kreuter gave a report about nano-particles, which can overcome the blood-brain barrier. With Dr. Eric J. Kremer of Montpellier, France, we had an expert in the Canine-Adeno-Virus (CAV2). CAV2s have a very complex establishment, but have many advantages over classical viral vectors. Prof. Timothy Cox from Cambridge spoke about preclinical studies of a gene therapy for the Tay-Sachs syndrome with promising results. Prof. Beverly Davidson (Iowa) talked about „Biology of the cell in witness of CLN3” (JNCL). A possible gene therapy for the eye of JNCL children was presented by Prof. Ronald Crystal of Aussicht. He made the first clinical study with LINCL (CLN2) children and is now working on a transfer for the juvenile mode. The topic of Retinitis Pigmentosa mice was presented by Dr. Jens Duebel of the FMI in Basel. The ability to see may be partly recoverd by a transfection with an archaebacterical gene, which means it is possible that the visual decline of NCL-children could be cured. |
In accordance with the congress, the second NCL-Research-Award was given to American PhD student Matthew Micsenyi (32, li). Foundation founder Dr. Frank Husemann presented the €50.000 donated award.
Prof. Ronald Crystal (front) and Laura den Hertog (Beat Batten! Stiftung, back) |
D. Begley 
Agenda of the 9th national NCL-congress as download PDF
The following sponsors were of great assistance:
8th NCL- Congress
Agenda, abstracts and participant list of the 8th national NCL-congress as download PDF(~155 KB)
We would like to thank our generous sponsors:
7th NCL- Congress
On October 2nd 2008, the NCL-Foundation hosted the 7th NCL-congress, supported by longtime partner Hamburger Marriott Hotel. This year's focus was the development of current therapy approaches. Consultants were: Robert Steiner (stem cell substitute for NCL-children), Ronald Crystal (gene therapy for NCL-children), Beverly Davidson (enzyme substitution and small molecules) and Susan Cotman (NCL-mice, small molecules).
6th NCL- Congress
On October 11th 2007 in Munich, the 6th NCL-congress was attended bya select group of scientists. The main focus was on neuroimmunology. Additionally, scientists representing different pharmacological corporations were in attendance. As a consequence of the congress, there will be a new collaboration between Jon Cooper (NCL-expert) and Rudolf Martini (neuroimmunologist).
The NCL-centered part of the congress was embedded within the annual meeting of the German Neurogenetics Corporation.
Agenda of the 6th national NCL-congress as download PDF
5th NCL- Congress
Every year, the NCL-Foundation arranges a national NCL-congress for Germany. It is a one day workshop during which different scientists can communicate and find new connections and collaborators. The foundation invites scientists focusing on NCL-research themes and experts on NCL. After presentations, scientists focus on adiscussion about the current themes in research. With such a select, small group atmosphere a more result-oriented discussion is possible.
