ASI Conference Frequently Asked Questions

• How long are such conferences?
  The International Conferences happen every three years. The next one, our 7th, will take place in 2013 from May 9-13 in Plymouth, Massachusetts. More information on the 2013 can be found on the ASI Blog at http://alstrom-families.org/blog/
   
• Who comes to the Alström conferences?
  The conferences are open to anyone and everyone who has anything to do with Alström Syndrome. That includes individuals of all ages with the syndrome, their families, their doctors, researchers, caregivers, and teachers.
   
• What happens at Alström conferences?
  The conferences are a combination of talks by professionals, panel discussion groups composed of parents and/or patients, assess technology experts and displays, and, maybe most important of all, lots of social time together and fun activities.
   
• If there are discussions, how can people who can’t see and hear very well get help to understand everything?
  We do our very best to have someone with you who can describe what is going on. For those with hearing difficulties, we try and have a loop system available. If someone does not speak English, they either come to the conference with a translator or we try to find someone who speaks their language. Smiles and hugs are a language everyone understands.
   
• How can you meet other people whom you only know from the discussion list or private email writing? How can you recognize each other if people can’t see very well?
  Everyone you already know will be very eager to find you, and there are many sighted people around to help make the connections. In many ways it is like a big party and family reunion, especially for adults with the syndrome – the A-Team. They are ALL friendly.
   
• What about the people who have Alström? Do they come with their families or on their own? And, can you also spend some parts of the conference with only the young adults (without their families) to talk together about their experiences?
  Most of those with AS travel with their families, but there are always some who travel on their own. Once you arrive, there are many activities, talks, and private time together, so you will have many opportunities to share your experiences and/or get advice. There is great respect for the feelings and thoughts of adults with the syndrome.
   
• How can you orient yourself in a completely new and strange environment?
  There will be people to orient you and guide you whenever you need or want assistance. The conference center is quite accessible. Even the hotel staff will receive some training from us before we all get there. Remember, everyone at the conference is used to the syndrome, cares, and knows what to do.
   
• Where do participants live during the conference?
  All of us stay together in the same hotel. The venue we are using in 2013, the Radisson Plymouth Harbor in Plymouth, Massachusetts, just south of Boston, has many guest rooms, numerous meeting spaces, several restaurants, and a wonderful indoor swimming pool. The hotel is very, very close to many activities in the friendly nearby town.
   
• Are there workshops or discussions in smaller groups, or do you always talk in just the full group? Are there also speeches or something like that, so that one person talks about a theme to everybody, and afterwards you can ask questions of the specialist?
  We do all of the things you mention on a variety of topics, and, remember, we also plan fun activities together like visiting local attractions, having a dance, playing games and just having time to talk together.
   
• How many people come to such conferences?
  We should have somewhere between 250 and 350 people at the 2013 conference. It is an astounding experience because every single person knows about the syndrome and everyone loves being together with their Alstrom Family. Many will attend for the first time, but many will return to reunite with their friends from previous years.
   
• How do you get information in preparation?
  We will publish information on the Blog and in the newsletter. We will also send registration forms by e-mail or by snail mail. We will provide more and more information as we get closer and closer to the dates.
   
• How often do such conferences take place?
  The big conferences take place every three years, but we sometimes have smaller regional conferences. Several years ago, we met in Ghent, Belgium and families came from Belgium, France, Germany, the Netherlands, and Switzerland. This coming July, we will help sponsor a small meeting in Turkey. Sometimes, families who have become friends will get together on their own.
   
• How do you travel to the conference sites from Europe?
  Most people from Europe will fly into Boston. ASI might pick you up and take you to the hotel in Plymouth, or your family might want to rent a car. There is also a public bus from the airport that stops quite close to the hotel. In 2010, people came from 15 different countries and 40 different USA States. Traveling can be tiring and annoying, but it is worth it in the end.
   
• Are the conferences at different places or countries each time or are they always in the USA?
  Several conferences have been hosted in Canada. This year we considered a venue in England, but generally, yes, they are in the USA, mostly because it is easier for us to raise money here and to organize such a complex undertaking.