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August 2009

Impressive turnout for sixth annual Swiss GIST patient group meeting

On April 24, 2009, approximately 85 GIST patients, caregivers, GIST health care experts, Life Raft Country liaison reps from Italy and Germany, and representatives from the pharmaceutical industry, gathered in Zurich, Switzerland for the sixth time. Switzerland is a small country (population of 7.58 million) which shares four national languages and distinct regional/cultural differences within its own borders. The sheer size of the gathering reflected the high level of interest clearly demonstrating that there is a need to continue hosting meetings of this kind in the future.

All those who were in attendance had been informed via the website that Dr. Ulrich Schnorf had passed away on March 15, 2009 (please click here for Ulrich's obituary). As the founding father of the Swiss GIST support group, Ueli’s concern until the very end of his life was to ensure that this meeting went forward. He committed the few brief days between two prolonged hospital stays to making final preparations for this meeting. Ueli’s perseverance and commitment were illustrated and appreciated throughout the day. Many tributes were delivered posthumously to honor the man who had dedicated a significant portion of the past eight years of his life supporting fellow GISTers.

What motivates someone to attend such a meeting? The answer will remain consistent throughout time:

● Obtain the latest medical information on GIST, treatment successes/failures, future options

● Share the human/personal side of having GIST, relate experiences, receive and provide comfort, and acknowledge fears and concerns.

Everyone came to the meeting with expectations and overall, the participants and organizers were not disappointed. Ueli’s widow, Helga Meier Schnorf made sure that the organization of the meeting was completed to a high standard and Markus Wartenberg (Director of “Das Lebenshaus” Germany) stepped into Ueli’s shoes as the moderator (a difficult act to follow and which he did brilliantly).

The panel of speakers was truly impressive (please refer to www.gastrointestinalestromatumoren.com for details on individual presentations). Dr. Stephan Dirnhofer (University of Basel), Dr. Nicolas Widmer (CHUV, Lausanne), Dr. Michael Montemurro (CHUV, Lausanne), Dr. Sebastian Bauer (University of Essen, Germany) all made outstanding, informative presentations throughout the day. Representatives from Novartis Pharma SA, Switzerland and Pfizer SA, Switzerland were also present. Bristol Myers Squibb SA, Switzerland was unable to attend but expressed an interest in discussing continued assistance to the group.

Overall, it was clearly demonstrated that there are various new treatments in the pipeline and the next eight to twelve months should provide some additional options for GIST patients. The creation of a legal not-for-profit entity (association) for the Swiss GIST support group is currently in the works and will hopefully come to fruition later this year. The newly updated website (thanks to Vito Mediavilla) has also been launched.

Dr. Urs Metzger, Ueli’s long term friend and surgeon, announced during his poignant closing remarks, that he would fulfil his final promise to Ueli to continue his work. He will be assisted in his task by Dr. Michael Montemurro with additional help from Markus Wartenberg. Dr. Metzger also promised to support Helga Meier Schnorf in founding the GIST support group association. Metzger will provide all this assistance despite an extremely demanding workload as Chief of Surgery and Medical Director of the Triemli Hospital in Zurich. Helga Meier Schnorf will run the administrative side of the patient support group. Most of the pharmaceutical companies have informally pledged their continued financial support to the group.

No organization should rely solely on one individual to function effectively. Ueli built, as a true Swiss, a solid foundation for the GIST support group. He has left in place all the necessary tools to allow his mission to grow and succeed without him. Ueli would have been proud on April 24 to experience the great turnout and to observe how smoothly everything ran. Perhaps most significantly, to see the validation of how worthwhile his personal efforts have been and how essential, once again, the meeting was for his fellow GISTers.

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