Report from 7th International Workshop on Peritoneal Malignancy and Video of Patient Representative Amani Albedah’s Speech

From Gerald Lewandowski, PMPRF Board Member and Research Committee Co-Chair:

The 7th International Workshop on Peritoneal Surface Maligancy was held in Uppsala, Sweden in September 2010.  The conference was truly international – attended by top physicians, nurses, researchers and other specialists from around the world who treat and research pseudomyxoma peritonei and other peritoneal surface malignancies.

The conference was also attended by a number of non-medical people, including me as a representative from PMP Research Foundation, Scott McCratic and Mina Boubaki from PMP Awareness / Bellybuttons and Amani Albedah from The Kuwait Group for Peritoneal Surface Malignancy. We thought it was important for our organization to observe and learn at the sessions, but we also wanted to interact with the specialists and help the voice of patients be heard in this important setting.

Over the course of 3 days, there were extensive presentations on current treatment protocols, research, statistics, and surgical techniques.  There were also thoughtful discussions about the difficult decisions that medical personnel and patients have to make in dealing with these diseases.

One my personal highlights was getting to meet and talk to one of the recipients of PMPRF’s three 2009 research grants: Dr. Andrew Renehan from Manchester, England.  Dr. Renehan explained to me how he had developed his research plan but had been unable to get funding from his hospital system – until he reapplied after being awarded our grant.  He was able to successfully use our grant as part of the argument to get approval for the remaining funding he required for his research.  So PMPRF’s grant, the result of the generosity of donations from so many people, was a stepping stone to the full funding of his encouraging research.  And better yet, Dr. Renehan was both honored and incredibly grateful to have received the award.

The welcome dinner for the conference was held at the beautiful Uppsala Castle, and the highlight was that a PMP patient was invited as the speaker. Amani Albedah had an otherwise rowdy crowd silently listen as she explained our plight as patients and implored these dedicated, hard working physicians to please do more – work harder – and find new ways to treat our afflictions.  Many of the presentations over the course of the conference illuminated this same point.  You can watch a video of Amani’s speech on our ACPMP Videos page (I apologize for the shaky picture, but I did not have the benefit of a tripod!).

For every success story, there are losses and for all the skillful surgical talents in that conference hall, it isn’t enough to cure us all.  The good news is there were over 100 physicians and researchers from around the world who understand and are trying to work together to make that better.  Hopefully we can keep helping them in some small way.

We look forward to taking on an even more active role in 2012 in Berlin at the 8th International Workshop, and hopefully we can all make some progress in the meantime.