I have just returned from the 5th International Scientific Congress where approximately 85 doctors and scientists who have been studying SDS or are interested in learning more about SDS gathered in Amsterdam this past June 18th-20th. In addition to the aforementioned were representatives of many of the international support groups as well as a smattering of family members of SDS patients from various countries such as Holland, Denmark and the USA. Countries that were represented through their support group were: Canada, the UK, Italy, Holland of course, and Norway.

The Congress was organized by Dr. Liesbeth Siderius and Dr. Taco Kuijpers, both of the Netherlands and was financially supported by Shwachman Diamond Syndrome Foundation (USA), Shwachman Diamond Syndrome Canada, Shwachman Syndrome Italian Association, Stichting Shwachman Syndroom Support Holland and Amgen, manufacturer of medical drugs such as Neulasta and Neupogen. These kinds of conferences are very expensive to organize and we on the board of SDSF are proud to be sponsors of a meeting that gathers so many brilliant doctors and researchers who are diligently working on our behalf to create benefits for our SDS community.

The topics covered at this meeting were: genetics and phenotype variation; the SDS gene (SBDS) and its function, variation, modeling and expression; gastrointestinal issues and growth; bone metabolism, growth and abnormalities; psychological and behavioral and hematological issues. Many of the subtopics included were how mouse models can help determine the function of the gene and find other responsible genes; research on finding other mutations and other genes for the SDS-like patients; what causes the patient to transform into aplastic anemia, leukemia or MDS?; diagnostic guidelines; medical and psychological issues pertaining to the growing adult population and bone marrow transplant information. There was a terrific poster session where more research was presented on approximately 20 posters instead of given in a talk.

We are not publishing the actual program of the Congress because it jeopardizes the potential of each of the presenters to publish their work in a medical publication. We all benefit if one of “our” researchers can publish in a national medical publication because then more doctors and scientists can learn about SDS. The more awareness we have of this disease, the more that your local doctor will discover about SDS diagnosis, treatments and management. This conference has helped to create more awareness for SDS in terms of attracting more research and researchers and possibly more funding as well. Please continue to financially support your support group, whatever country you are in, as we support these international, medical research conferences. Every SDS patient and his/her family benefits from this important work. There are very few drug companies and corporations who are willing to donate funding to this tiny, rare disease and we are counting on you and your family and friends to support SDSF which in turns helps pay for these meetings and of course research.

It was announced at the end of the conference that the next Scientific Congress will take place in the New York, USA in 2011.

The list of presenters is as follows:

Dr. Johanna Rommens, The Hospital for Sick Children, Toronto, Canada; Dr. Heather Ball, The Hospital for Sick Children, Toronto, Canada; Dr. Elena Nicolis, University Hospital, Verona, Italy; Leslie Steele, MSc, Dept. of Pediatric Lab Medicine, The Hospital for Sick Children, Toronto, Canada; Dr. Nikolaus Trede, University of Utah; Dr. Ivo Touw, Erasmus Medical Center, Rotterdam, Netherlands; Dr. Jean Donadieu, AP-HP Hospital Trousseau, Paris, France;

Hanming Wang, The Hospital for Sick Children, Toronto, Canada; Dr. Alan Warren, MRC Lab of Molecular Biology, Cambridge, UK; Christine Hilcenko, MRC Lab of Molecular Biology, Cambridge, UK; Rastislav Horos, Erasmus Medical Center, Rotterdam, Netherlands; Dr. Sanna Toiviainen-Salo, Helsinki University Hospital, Helsinki, Finland; Dr. Liesbeth Siderius, pediatrician, the Netherlands; Dr. Johnson Liu, The Feinstein Institute for Medical Research, Manhasset, NY; Dr. Peter Durie, The Hospital for Sick Children, Toronto, Canada;

Dr. Jutta Koeglmeier, Chelsea and Westminster Hospital, London, UK; Dr. Marie Helfrich, University of Aberdeen, Aberdeen, UK; Dr. Arif Manji, The Hospital for Sick Children, Toronto, Canada; Marina Tourlakis, MSc, The Hospital for Sick Children, Toronto, Canada; Dr. Jan Booij, Academic Medical Center, Amsterdam, Netherlands; Dr. Elizabeth Kerr, The Hospital for Sick Children, Toronto, Canada; Sandra Perobelli, Cystic Fibrosis Center, Verona, Italy;

Dr. Hans Joenje, Free University, Amsterdam, Netherlands; Christopher Allen, BSc, The Hospital for Sick Children, Toronto, Canada; Dr. Gulay Sezgin, Schneider Children’s Hospital, New Hyde Park, NY; Saswati Sen, The Hospital for Sick Children, Toronto, Canada; Dr. Robbert Bredius, Leiden University Medical Center, Leiden, Netherlands, Dr. Akiko Shimamura, Fred Hutchinson Cancer Research Center, University of Washington, Seattle, WA;