Report Contact Weekend 2006

ALS Contact Weekend – September 8 till 10 2006

This year we came together in the cosmopolitan seaside resort of Ostend.

Why Ostend I hear the non-participants already ask?

Year after year, the ALS Liga is looking for a attractive location. Ostend offers tourists many advantages and sightseeing with historical past. So you can choose from a visit to the harbor, the marina, the Kursaal casino, the Wellington Racetrack and many other attractions. On the cultural side Ostend competes with other coast cities. This year in Ostend well known artists such as Jan Fabre, participated to the "Beaufort 2006" event again. Not far from Ravelingen we could have a view at "Maman" the spider on Ensor's grave. Additionally Ostend is a shopper's paradise with several shops that are open on Sunday morning. But also a walk in the wind on the seafront and walking along the Royal and Venetian galleries belong to possibility.

Enough about Ostend. Now more about the super pleasant weekend and how we infested Ostend.

On Friday afternoon we, the ALS members, invaded drop by drop the holiday home Ravelingen. The room allocation proceeded without any major incidents. Mia did again a wonderfull job with the rooms and like every year tried with everyone's wishes into account. The board members handed us a bag with our key, information sheet, caricaturist voucher and beverage- and food coupons. We used the drink vouchers immediately eager to wash away the dust from the long journey.

At six thirty gathering sign was given to get diner together. After chosen place in the dining room, we rushed to the cold buffet for silky smoked salmon and halibut, the delicious meats and cheeses, fresh garnish of lettuce, tomatoes, or ... onion soup. Even a delicious treat dessert was on the list.

Afterwards, most met in the bar. Others preferred the peace and quiet of their bedroom. Because energy was acquired to enjoy the show Mong and his wife Magda would bring together with the illustration. At eight thirty Mong asked to warn him when the sound was too overwhelming. And for that he did a small test with starting the first verze. On the question "you're not deaf?" everyone approved to go on. Mong is a real entertainer who brings a lot of variety in his performance. He mixes songs with jokes sometimes spicy and funny jokes. He said laughingly that he likes acting for the General Tricky Earthly Syndicate of the ALS. After the break he also paid tribute to his father, who died of ALS. Most of us knew the "Waltz of ALS," in which he sings about the contrast on the chance to win the lottery and the chance to get ALS. Around eleven o'clock he finished. He revealed that Magda's Birthday was the next day. She got from all of us a heartfelt applause and a big bouquet of flowers.

Exhausted but happy we went to chat at the bar or looked up our beds.

After a refreshing sleep, we found each other again at the breakfast table. All busy with questions: "What will you do? Are you going to the market? We want to go for a walk on the dike, it seems they are fully renovating? "So many things, something for everyone.

With lunch the same scene at the table, but to check who and when going to the caricaturist Luc Daenen. This was not so easy because there was also a physio session planned with Ivo Melotte. But here too everything fell back on its feet. Luc drew quick through all afternoon and transformed really beautiful drawings from his pencil. Everyone was every time amazed by his artistic talent. It became so far that the ALS Liga had to reject non ALS holidaymakers.

"And what about the kine session?" Well Ivo knew a huge success. Enthusiastic and highly motivated he explained techniques on how your breathing could work better and how to entice certain muscle groups with limited motor skills. Even for a better digestion he had tips. He gained his knowledge by delving into the ancient traditions of combat techniques from China. The exercises he teached come from Tai Chi and Qigong. Everyone was very interested and asked detailed questions about how the Chinese fighting techniques could offer assistance with health problems. The patients who participated in the exercises were very impressed. After his explanation even Danny, our president experienced personally how he could activate his digestion. Greatly impressed, we also made with super motivated Ivo appointments. Texts, videos ... It is not yet clear how, but it’s certain that this story continues.

After this fascinating afternoon we were again spoiled by Mong. This time he was alone with a completely different show. He started with a tribute to Raymond Devos. This Belgian humorist and comedian experienced especially success in France and Wallonia. Raymond Devos was the man of the countless puns or better magician of the French language. His audience appreciated his virtuosity and originality enormous. In 1993 Mong got his permission to do the impossible, namely to translate these texts into Dutch. Did Mong succeed in this? If you ask the audience, they all say "Yes". Fantastic, resourceful or better Mong juggled with the Dutch language. Mong didn’t want to stop, but all good things come to an end. Disappointed we were looking for our beds again.

"Wow, it's Sunday again?" Most of us started to get a little heart, because the weekend was running to an end. But still 21 patients, their attendants and the 19 other participants found still some time to get fresh air before lunch. The sun was indeed present again and the wind diminished in strength.

In the afternoon, we welcomed another 40 conference participants (patients, caretakers and interestees) so we were +/- 110 people. After lunch we moved to the conference room. Dr. Storkebaum had the honor as first speaker. He gave us information about its research on ALS in the fruit fly. Dr. Lemmens followed with the study of ALS in the zebrafish. Prof. Dr. Verfaillie closed the congress with its stem cell research. These lectures were recorded and can be viewed again on our website under "Activities". Here you find a brief summary of each lecture.

Danny, our chairman, took the last word. He thanked the speakers and participants of the congress and weekend. Regretfully everyone said goodbye, but everywhere we heard very firmly "See you next year."


Anne Wouters

Translation: Marina