Written by Ellen van Arem de Haas
It was a foggy autumn Saturday morning, September 24th, 2011, when my husband and I drove to the annual GIST Contact Day. From all parts of our country as well as from Belgium, and countries like Germany and Portugal, Dutch speaking members were on their way to celebrate life with each other.
This year, we experienced loads of grief, as 16 members (and more non-members) have passed away, all because of GIST. We remembered those special people as our chairman of the board, Jack Asselbergs, mentioned their names with honor. We swallowed our tears, and we felt deeply grateful as we have had the opportunity, though sometimes only for a short time, to get to know those unfortunate members a little bit.
Jack presented our freshly printed new GIST brochure, a general outline of what you need to know, what you must ask at your doctor’s, and what you have to do if he or she appears not to be a GIST-expert. We’re sending it to all (new) members. Even more, we’re sending it to all hospitals in The Netherlands, as well as the Flemish ones in Belgium, and hope they want to display our important message in their waiting rooms. Fingers crossed! Too many patients do not get the best treatment, and this has to change.
Sonja Adriaansz from the newly founded charity, ‘Een Gift voor GIST’ (a gift for GIST), told the story of her beloved partner who passed away a year ago. He had a dream to make public funding possible for GIST studies, as this is not custom in The Netherlands. The first project they tackled is research conducted by Professor Hans Gelderblom, from LUMC (the Leids University Medical Centre). He was the guest speaker of the day, actually for the third time! His speech about GIST yesterday, today, and heading tomorrow, was swift and clear, as was his skilled leadership of the medical panel of the day. The audience heard their previously emailed questions answered, and raised their hands to ask new ones.
Laughter roared when Gleevec was mentioned as being a big profit winner for years for Novartis, of course being a profit winner for most of our patients as well.
In the afternoon our guests had a few choices, a workshop on the psychosocial problems resulting from receiving a GIST diagnosis, or having a long walk in the woods surrounding the conference building, and an old renovated cow house on an ancient estate. Afterwards, we had a few drinks to clear our throats from loads of laughter and dust and then we enjoyed our dinner together.
Tidying up the old barn, as we were part of the organization of the day, Helmer and I were cheerful because of all the happy faces saying goodbye, the heartfelt hugs, and the pecks on the cheek. Later on, we headed home in the warm rays of the descending summery autumn sun.