Extensive report contact moment 2013

Contact moment Middelpunt 2013

On Friday, September 6th at 11 o’clock all volunteers from the ALS Liga gathered. The program for the weekend was explained, our tasks were described and the necessary badges and keys were issued. It was the core group, who arrived one day earlier, that took care of this. It would be the first time that so many guests would stay at Middelpunt. For the first time the second floor would be used and the local staff would have ensure a smooth running of the first weekend at full occupancy.

During the afternoon the welcome committee was ready to receive the pALS with their aides, who were slowly starting to arrive. Yannick was standing at the gate and when later on it started to rain he protected himself with umbrellas. Each incoming group was guided by us, after which they were welcomed by Mia and accompanied to their rooms by the volunteers. Later on every group went to the dining room were three ladies were listening to their medical needs and other wishes. The rooms got filled with enjoyable people, who despite the burden of the transfer were happy to be there. A few courageous ones even came by public transport from far places such as Genk and Deurne, a special praise for them.

As of 18pm we all gathered for the dinner buffet. Evy welcomed us all at Middelpunt, a glass house that will become a new home. She invited the guests to share their honest opinion by giving constructive comments. By evaluating them Middelpunt can become better. For diner we had enough volunteers available so that pALS and their aides could easily make their choices from the cold and warm buffet. At the table people were talking on and on about the encounters and first impressions. That night we had the pleasure of enjoying the charming presence of Marleen and Leah and we also saw Erik Goris in his relaxed summery clothes. A contact moment gives the ideal opportunity for our ambassadors to get to know pALS and their relatives. They were happy to see that their presence was very much appreciated by all of them. At night the fans were able to watch an important football game: Scotland – Belgium, the final result was 0-2. Of course several drinks were also provided. After that it was bedtime, for pALS often a daunting task. The next day we would hear how it worked out.

Saturday, September 7th started with an open breakfast from 8 to 10am. Early birds were able to witness the nursing staff taking their breakfast. Also masseuse Manon was there, she already went for a trip to the sea that morning. The next two days she was about to gain a good reputation. A lot of stiff bodies were curatively treated by her hands. Between 10 and 12 am most of the people present also had the time to explore the wider surroundings of Middelpunt. The sea was that high that only a small stretch of sand was visible. The dyke was the place to be to stroll around or to have a drink. The lunch buffet afterwards continued until 2 o’clock because in the meantime words soon began to flow and a lot of newly made friends were sitting together at the table. For a lot of the people present the leisure time which followed was dedicated to the sun. Beautiful clouds and a deep blue sky moved by and became visible on the windows at the other end of the beautiful cloister. I bet that here and there some did a beauty sleep. But lots of the visitors wanted to enjoy another walk or fully enjoy the comfort of their rooms. Some even took the chance to accept the offer for a more sportive activity with a special bike.

After 4 o’clock all the attention was focused on the big meeting room where the reception was about to start. The impressive view of two bikes on reels predicted a true spectacle. Ambassador Mong was handed a microphone so that he could foresee the conversation, it suited him perfectly. Cyclists Geert and Gino started their heavy workout on the reels, Mong questioned them about their plans and hopped between the 2 cyclists, as a true cycling reporter would do. He even dared to release the 'doping ghost' into the public, without anyone suspecting it. In the background bits and pieces of France showed up on the wall. Next year Geert and Gino will be cycling 4.000 kilometers for ALS, sponsored by Johan Musseeuw. With the support of some volunteers the formula was opened to a cycling event in which others can also participate. Climbing, that is what will happen and afterwards a lot of descends at high speed. I already know now that the Tour the France will have difficulties in order to exceed our tour. At the other side of the table watercolors of the, in the meantime, deceased pALS, Andréa Matthijs were sold. We were thankful to welcome the three daughters of Andréa, who here participated again in the commemoration of their mother. In the end the sale would raise about 1.000 euro for Middelpunt. Throats were smeared, questions came from everywhere, the cyclists were asked to submit their comments, the trip around the Mont Ventoux was stipulated with a green moving line and art critics imagined themselves as Jan Hoet. In other words: a fun chaos was the result and we all enjoyed it.

After the subsequent diner buffer – tasty, or what did you think – we played some music. Mong brought along a true orchestra. The five musicians played the keys, bass, drum and blew as they were having the time of their lives. Mong replicated the vocal performances of Sinatra, Aznavour, van het Groenewoud and even (or almost) the one of the voice of Europe, Eddy Wally. Concerning this last one he had to use dope, which the experts in the room did not fail to notice. He was able to amaze the good listener whether it concerned Brol, La Paloma or Amatore Rumba. During the program he also remembered his father who died of ALS in 1990, at that time an unknown disease for most people. He paid tribute to his father and also commended the ALS Liga with their interpretation of the songs he had especially recorded for this. Impressive moments which he alternated with his verbal firework and his jokes. We hope to see lots more of him and his friends.

Sunday, September 8th was the day of the farewell. At breakfast the extensive options were tested in all kinds of varieties. The breakfast looked fresh and attractive… you start to dream and hope that it will never come to an end. A few people still wanted to enjoy the sea, especially since the sun was still out there. The lunch became our final joint meal and was finished with a nice dessert. After that we all went back to big meeting room where the scientific symposium, organized by Anne, would take place. She invited three speakers, three Belgian researchers who represented three generations. All of them internationally renowned and who also got granted with scholarships from ALSA in order to contribute to the worldwide research into ALS.

The first speaker, ULB professor Roland Pochet gave an explanation about stem cells and the options they bring to the ALS research. The professor started by remembering doctor Jean-Martin Charcot who defined the disease for the very first time in the 19th century. Afterwards he showed the types of stem cells, the options they bring along and the way they can be obtained. He also pointed out the political debate that focuses on the ethical principles about the use of stem cells. Then he discussed the theoretical possibilities and indicated that the full process takes a lot of time. He concluded highlighting a recent research and thanked his sponsors. The next speaker was professor Dr. Ludo Van Den Bosch from Leuven who explained to us the functioning of a research lab. He explained the opportunities that are made possible by animal study models, especially mice, rats and zebra fishes. He also gave us a better understanding of the research done by a lot of researchers in Leuven, in most cases even with a temporary appointment, but who are working hard on concrete projects. Afterwards he was asked a lot of questions, especially about his opinion about the sponsorship of research into rare diseases and his ethical attitude with regards to animal studies was well-defined. The third speaker was the young researcher Elke Bogaert. She recently received a scholarship for her research with the fruit fly. This is an example of fundamental research that could possibly lead to a medicine. The way there is long, as the research is complex. The final speaker was moderator Anne Jolie, volunteer for the ALS Liga. From her experience she explained the steps that have to be followed in experimental research in order to get the accreditation. Because of the definite character of the research we need to be careful: none of the steps can be skipped. She also discussed clinical trials in Phase I/II or IIa, IIb or III and gave some examples of active researches and the phase they are in. finally she also explained that the ALS Liga has the possibility to get quicker access to confidential information of some researches. In the end Myrthe Putzeys gave an ALS-mascot to the speakers.

After the seriousness of the scientific exposures it was time to say goodbye. Most people already checked out of their rooms, pALS and their aides were ready to say farewell and to go home. This was the final phase of our intensive contact moment, the reactions will make us wiser. The ALS Liga experienced a historic event and we hope the future will bring more of that. But we will leave the crystal ball for what it is, there is still a lot of work to do. In the meantime we would like to thank all and wish them nothing but the best!


Translation: S. Habets