Report ALS-contact moment 2014
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How it all started …
In the middle of all the hustle and bustle of the ALS Ice Bucket Challenge our secretarial office was getting prepared for the ALS contact moment 2014 which was planned from Friday October 5th up to Sunday September 7th in the care hotel ‘Middelpunt’ in Middelkerke. On the first day we started early to make sure everything was ready for our guests. A special thank you to about 30 employees of the company Fluxys, who volunteered on Friday for the ALS contact weekend as a way of teambuilding.
Reception
Between 13 and 16h we welcomed our guests. The team of volunteers revealed themselves as friendly receptionists, as porters who carried the luggage to the rooms, as assistants of the care takers who took accurate note of all the needs and relaxation desires. Pretty soon there was a pleasant busyness in the restaurant and on the terrace of pALS and their relatives who were catching up or who were making initial contacts with each other.
Quiz
After diner Orrel organized a, in his own words, ‘small but simple quiz’ of 80 questions. Teams of 4 to 6 people were going for the victory. It were the ‘Duinkonijnen’ who won. But no need to be sad, everyone received a price, and most important: everyone had a lot of fun.
If anyone would like to repeat it or would like to participate in it, you can contact our quizmaster Orrel. It would be his pleasure to come to you and organize this quiz for you and your friends.
Special ALS Ice Bucket Challenge and a visit of the press
Saturday morning the 40 pALS present participated together with their family and the team of volunteers in a surprising and special ALS Ice Bucket Challenge. But no one got wet however, because the ice shower was replaced by a rain shower of colorful shredded scraps of paper. Our worldwide biggest group of pALS who commonly met the ALS Ice Bucket Challenge nominated Joëlle Milquet, Laurette Onkelinx and Erik Van Looy. Some exceptional pALS and their families took up the ‘real’ challenges where even Bill Clinton got nominated. The invited photographers captured this spectacle for publication in their journals. A camera team of the Ketnet youth news Karrewiet was present to film this and to make a moving documentary of Myrte. You can watch this all on our Facebook page: www.fb.com/ALSLiga.
Scientific session
In the afternoon the promising and young researcher Steven Boeynaems (Lab Neurobiology, KU Leuven/VIB) presented his research method for ALS to us. Because complex diseases are best examined with simple models he is investigating the mechanism of action of ALS in yeast. The basic knowledge that comes from this will be tested afterwards in more complex organisms such as the fruit fly, the zebrafish, and eventually the human being. This year we also welcomed an inspiring international host: Bernard Muller from the Netherlands. Bernard is managing director and was diagnosed with ALS two years ago. Since then he is the driving force of the Project MinE, the international research for the genetic basis of ALS. He also founded the biotech company Treeway that is developing potential medication for ALS. The core of the scientific session was a panel discussion with representatives of the pharmaceutical industry (umbrella organization Pharma.be, pharmaceutical company BioGen Idec, biotech company Treeway), a physician (UZGent/St. Lucas Gent) and was led by moderator Peter Gielen (Trefpunt Zelfhulp), with interaction from the pALS present and their family related to the topic ‘making experimental medication faster accessible for ALS-patients’
Stories and jokes from Mong and Nico
Early evening we welcomed our ALS-ambassador Mong and his spouse. Since a performance was not planned, the ‘Vieze Gasten’ were not present this time. But Mong would not be Mong if, after diner, he would not spontaneously entertain the people present with interesting stories livened up with jokes. Quickly he found a co-entertainer in the audience, Nico, who seemed to have an almost inexhaustible stock of jokes.
Info desks for solutions/services within the Convention ALS/MS
Sunday morning pALS and their relatives were able to gather more information about the services active in the Convention ALS/MS. Via this program it is possible for pALS to get admitted with priority from their home or out of a hospital in a residential care facility. Moreover this fair gives you the opportunity to get more information about the practical possibilities when adapting the house.
Continuous relaxation therapy
It was possible for pALS and/or their partner to enjoy relaxation therapy throughout the full ALS-contact moment. They were able to choose between a relaxing parkerbath and different types of massages. On behalf of all the pALS and their families present we would like to say a special thank you to the therapist, Marion, for her commitment.
A ray of sunshine and saying goodbye
Sunday around lunchtime the sun came out. Het outdoor terrace got frequently visited for a chat. Some enjoyed their aperitif. After lunch it was time to say goodbye to each other. During the days afterwards we received a lot of positive reactions on our Facebook page about the ALS-contact moment 2014. A motivation for the ALS Ligue to start looking forward to a next edition.
Translation: S. Janssens
