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PWSA (USA)’s First International Hyperphagia Conference was a Big Success!By: Janalee Heinemann, PWSA (USA) Director of Research & Medical Affairs Many of you will remember me writing about how impressed I have been with the similarities between the hyperphagia (the extreme unsatisfied drive to consume food) in Prader-Willi syndrome (PWS) and some of the other rare disorders. The difference being that with the other syndromes, it is not as universal as with PWS, but often is just as dramatic when it does present. With the blessing of the board, Jim Kane and I decided to co-coordinate this first ever conference bringing experts from the rare disorders together along with NIH staff, and pharmaceutical companies. Our scientific co-chairs were Dr. Tony Goldstone from the UK and Dr. Ann Scheimann from Baltimore, MD. The speakers who specialize in the rare disorders and presented on the hyperphagia component of their syndrome were:Prader-Willi syndrome Tony Goldstone, M.D., Ph.D., Imperial College London, UK Alström syndrome Pietro Maffei, M.D., Padua University Hospital, ItalyWAGR syndrome Joan Han, M.D., Unit on Growth and Obesity, NICHD, NIH Fragile X syndrome Randi Hagerman, M.D., MIND Institute of California Bardet-Biedl syndrome Leslie Bieseker, M.D., National Human Genome Research Inst., NIH Our keynote speakers who presented on the overall topic of obesity, hunger and hyperphagia were from the Pennington Biomedical Research Center, LA and are internationally recognized for their research in this area: George A. Bray, M.D., Boyd Professor, Chief, Division of Clinical Obesity and Metabolism Hans-Rudolf Berthoud, Ph.D., Professor, Department of Neurology and Nutrition The afternoon involved a series of eight simultaneous round table discussions and participants were able to rotate throughout the afternoon to three tables each. Three main questions were posed to each group. The goal was to learn about the key components of hyperphagia from each other and how we can enhance collaboration in research. New ideas were generated for how to advance research on hyperphagia, hunger and obesity. Areas identified by the groups requiring more research included:
Examining evidence of ciliary dysfunction in PWS including mouse models
Improved understanding of hyperphagia and obesity in these rare disorders and mapping the pathophysiology may lead to an increased understanding of obesity in the general population. Rare syndromes can teach us about the architecture of eating behavior. We received very positive feedback from attendees from the various disorders and backgrounds and are delighted it was a success. PWSA (USA) is offering a Best Idea Grant (BIG) of up to $100,000 available only to those who attended the conference. For more information on the grant and the conference go to www.hyperphagia.org. A Sampling of Comments from Those Who Were There …congratulations on
a superbly organized and very interesting meeting. I found the
roundtable discussions were very animated and interesting, and I learned a
lot myself. I really hope this well-planned event will be a boost to
research on these diseases. The
organizers have done a great job sending out a lot of background information
and providing meeting prep materials! The whole event turned out
better than I even imagined! Great speakers and a great forum for
collaboration, great food, incredible hotel…It takes such a huge effort to
pull this kind of thing off and I feel like everyone on the team gave 110%
and made it seem effortless. conference was
fantastic...no glitches, no complaints
…I
really look forward to seeing what people came up with as important and
salient for study…"GREAT JOB" in putting on a conference that finally
figured out how to get people working together. I particularly enjoyed learning more about other
disorders that have hyperphagia as a feature, and I think that researchers
in those areas had the opportunity to learn more about PWS. Thank you for
inviting FPWR to participate. edited: 02/24/2010 |