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;
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