Assocation de la Suisse Romande et Italenne sontre les Myopathies
After meeting with the NHR in Sweden I ventured to Switzerland. It was a two hour flight and I was in Zurich. However, I arrived late and there was no way to get a train to Les Diablerets where the local meeting was to be held. After a three hour train ride I ended in Ailge and a friendly cab driver took me to the hotel. Lucky thing as they had a full blown party going on…In the morning I took the train up the hill and found the destination.
I initially wanted to meet with Ms. Piguet and luckily on Saturday they were having a outing to which the members were invited. I was also invited and thank my hostess. About 200 members did attend this meeting. The meeting was at the Masion de Congres in Les Diablerets, Switzerland and the hotel that we stayed at was Hotel de la Source. http://www.hotel-les-cources.ch
It was a grand meeting and Ms. Lilo Piguet was my hostess and I found many guests who spoke English. I was introduced to the president of the association as well as many other fine guests. We had a chance to talk, and there were small small things to eat as well as some orange juice and some Swiss wine (Which is very good!).
After talking we went to have some lunch and then the president gave a speech in French which I did not understand but he did introduce me as a delegate from the USA. There was a lot of good information sharing.
Unfortunately, there were no members there with the myotonic form of muscular dystrophy. The ASRIM does have several members with this disease but none attended this particular meeting. I did meet several families with other children with DM.
One thing that is not as advanced in Europe is the accessibility. The laws in Switzerland are not uniform and run according to each state or Canton. So more federal legislation is needed but this is difficult in the way the government is set up. This is also true of France. The USA seems to have some of the best laws for access.
Everyone appreciates the summer camp that is held. They have about 7-9 days at the summer camp for young people. Respite care is not as readily available in Switzerland.
They also hold a telethon that raises a lot of money for research for Muscular Dystrophy. Most of the money collected goes to research. Not as much is available for day to day management of the disease. The telethon was held in a building in the Les Diablerets area. The local craftsman raised this building in 36 hours. It was later moved to the Hotel Les Sources in Les Diablerets. It is a beautiful structure.
I had a very nice lunch with the Jowlett’s and also Eve and Henve Bozec. I thank them very much for their kind hospitality.
Here are some Photo’s from the conference