ALS contact weekend 2016 report
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Friday afternoon on September 2 we welcomed about 40 pALS with their mentors in caring facility Middelpunt at Middelkerke, to stay there until Sunday with our team of volunteers in the spirit of the annual ALS contact moment. Quickly after registering the first spontaneous meetings began. After shortly freshening up in the rooms we gathered at the restaurant. Mia welcomed everyone in her speech, thanked sponsor the National Lottery (de Nationale Loterij) and everyone who put effort into this initiative. Together we had a toast to the weekend, after which the buffet of the Italian night was opened. To stimulate digestion it transitioned into a party with DJ Charel where a guest singer brought a memorable version of the song Santa Maria.
Saturday we could gain useful information at diverse info booths before and after lunch. In the meantime people played paintball through laser control, went clay-pigeon shooting and golfing in the pleasant sun. All throughout pALS could also enjoy relaxation therapies, Parker baths, pedicure/manicure and massages by employees of the Institute for Professional Health. Halfway through the afternoon we welcomed a theater company from the Netherlands which brought a short version of the play ‘What if ALS…?!? The adventures of Pinkie’, made from the same titled book for children to teach them what ALS is. We also got a pleasant visit from our ALS ambassadors Marleen Merckx and Mong Rosseel. After a delicious dinner a Bingo night with many prizes was organized.
On Sunday not long before lunch we gathered at the inside courtyard for a group picture with ‘brotherhood’ as the theme. A few more pALS joined the group. They had lunch with us, after which everyone went to the large hall for a scientific session. Several companies had made presentations about how clinical studies generally go (BioGen Idec) and about the VITALITY-3 clinical trial with Tirasemitiv (Cytokinetics). Afterwards Prof. Philip Van Damme (KU Leuven/VIB) and Prof. Leonard van den Berh (UCM Utrecht) debated about ‘ALS research: Netherlands-Belgium cooperation and internationally’, with Prof. Ludo Van den Bosch (KU Leuven/VIB) as the moderator. It became a lively interaction with interesting questions from the present pALS and their mentors. In the end we said our goodbyes, with the promise of organizing the ALS contact moment again next year (the first weekend of September).
Would you like to relive the ALS contact moment through video images, then keep an eye on ALS.be, social media and ALS TV where we regularly post pictures and video reports.
Translation: Sara De Roy
