Brief report contact moment 2013

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Contact moment 6/8 September at Middelpunt

Friday, September 6th was D-day for Middelpunt and the ALS Liga. It was the first time that the care center would welcome this many guests, the second floor became operational and for the first weekend the staff was at full occupancy. The core group already arrived on Thursday and now also the volunteers arrived and got their instructions. In the course of the afternoon the pALS and their attendant entered little by little. They were all accompanied to the reception, received the necessary guidelines and keys from Mia and their luggage was dropped off in the right room. Later on they would make known of their special needs and desires to our specialists.

The dinner buffet was ready at 18.00h, Evy welcomed everyone at Middelpunt, our new home. She hoped to receive a lot of constructive criticism after the weekend. At the buffet volunteers filled the plates of pALS. Ambassador Marleen, Leah and Erik were the notable guests of honor. Later that night there was a possibility to watch the football game Scotland-Belgium in the large meeting room. After that it was bed time which can be quite hard for pALS. The nurses/doctors, Anne, Danielle, Herman, Maddy, Mireille and Paul, were available to offer the necessary support.

On Saturday the guests could enjoy breakfast between 8 and 10h. The rest of the free morning was devoted to walking, enjoying a wonderful massage or a trip to the seafront. The sun watched and saw that it was good and decided to stay for the rest of the day. The lunch at 12 o’clock went overtime and the first part of the afternoon was marked by the sun. The activities went from walking to cycling and the alternative was resting or sunbathing. As of 4 o’clock the doors of the large meeting room opened and it was time for the reception to start. There was also a spectacle foreseen with the attendance of Geert and Gino, two cyclists on reels, Mong the presenter who had been given the floor to speak, with on a large screen the route of a multi-day cycling trip of at least 4.000 kilometers and with a nicely displayed collection of aquarelles of the deceased pALS Andréa Matthijs. Mong showed himself as a clever presenter, sports journalist, art expert and a demagogue. Of course you could feel the ambiance was right and the atmosphere of questions and answers was buzzing. After their cycle moment Geert and Gino showed their bikes which they had received from their sponsor Johan Musseeuw for their cycling marathon for the benefit of the ALS Liga. You might be aware that they will not be doing this on their own. Right next to it aquarelles changed ownership, also in the interest of the ALS Liga. On the large screen we were able to follow the route to top of the Mont Ventoux with our own eyes. The following meal was enjoyed in a cosy atmosphere. After that the tables got emptied, the legs and ears got stretched for a concert of Mong and his five piece orchestra. And he sang, joked and pranked, and paid an impressive tribute to his father who died from ALS and he sang some surprising songs which were accompanied by the lovely sounds of the orchestra. He ended with Amatore Rumba, fun with a constructive message. A lot were thinking, ‘Goodbye Mong, take care and see you next year!’.

Also on Sunday the breakfast table was excessively filled with treats for everyone’s taste. Some wanted to visit the sea again, others were already thinking of packing their bags. It did not take long before we could all sit at the table for a final time and enjoy a wonderful main course and a lovely dessert. After that we all moved to the large meeting room for the scientific symposium that was composed by Anne. Three fascinating Belgian researchers with international fame occurred.

The speaker who opened was ULB professor Roland Pochet. He gave an explanation about stem cells and based on some schemes he showed what kind of promising opportunities they might involve on a technical level. He also discussed the possible ethical objections that might complicate the file. The second speaker was Ludo Van Den Bosch, professor and researcher at KU Leuven. He gave us an overview of animal models that are used to test specific curing techniques. He gave us a good overview of the researchers who test and experiment in the laboratories in Leuven. He was asked several questions and had a strong opinion about the research into rare diseases, which belongs in laboratories of universities. The third speaker was Elke Bogaert who recently received a scholarship for her research with fruit fly models. She gave us a good idea about how fundamental research is carried out. Finally Anne focused on the steps that have to be followed in experimental research before it can become eligible for an accreditation. Next to that she also updated us about 5 currently active studies, three with stem cells and two with other therapies. In the end Myrthe Putzeys gave an ALS-mascot to the speakers. After that the departure came and it all went smoothly. We hope to see a lot of you again next year. 


Translation: S. Janssens