Most of you will have already had information from the On-line Support Group, and the Dystonia Medical Research Foundation (DMRF), about the 3-yearly Patient symposium. This is being held in Miami from November 8 through 10.

Note that the symposium is co-sponsored by the NSDA and is very relevant to SD patients because SD is a focal dystonia, and there will be a significant group of SDrs attending.

More information about the medical sessions is available at the DMRF’s website:

www.dystonia-foundation.org

The next part of this message is new information–

"After the Saturday medical sessions have ended (about 3.30 pm) , there will be open several "Hospitality Rooms" showcasing some of the extensions and interests of the Dystonia Foundation. These provide the ideal opportunity to meet and socialise with others who share your interests. We encourage all Symposium attendees to visit one or more of these rooms which are open for support and information sharing.

These informal gatherings will include:

(1.) The NSDA Hospitality Room, hosted by Vice President Lylia Bennett &

Executive Director Dr. Robert McAlister.

(2.) The Musicians With Dystonia Room hosted by co-founder Glen Estrin.

(3.) The Paroxysmal Dystonia & Dyskinesias Network Room.

(4.) Mary Ann Womac and Allen Womac (DBS patient) will host the Surgery

Suite.

(5.) There will be an Internet Connections Room hosted by Anne Brett and

David Barton.

(6.) Authors Room featuring book sales and signings by:

· Dot Sowerby, author of Speechless: Living with Spasmodic Dysphonia

· Beka Serdans, author of I'm Moving Two and I'm Moving On... Are U

Information about the works of authors Keath Fraser, John Heney, Bette

Levine, and Mary Saracino will also be available in the Authors Room."

Do you know if there will be a PC there connected to the net?

Looking forward to the symposium... Just four weeks away!

It will be good to demonstrate the BB, for example, to those who haven't seen it before!

I'll feel torn between participating in the Internet Connections room and the SD room - I'd like to be in both!!

I'm not quite sure how the process works of deciding on the location of future DMRF symposiums. However they are only held once every three years so the chances one would be held in a particular location eg your home town or city, are slim. Previous ones have been held in New York City, and Victoria, BC.

Sometimes, in order to hold down expenses and get a range of movement disorder experts, the DMRF holds the major International Patient Symposium just before or after a major neurology conference - that is the case in Miami.

Sometimes there are regional symposiums.

The process of deciding on NSDA symposiums (which focus specifically on SD) is a little different, and you might find this information more useful:

Usually the NSDA sponsors a 'signature' symposium once a year, and it is often in March (eg Detroit 2001, Scottsdale (AZ) 2002). The next one will be in Washington, DC on March 8, 2003.

This is fantastic! I learned alot at my first SD symposium in Chicago years ago but the most educational dystonia event I've attended was the International Dystonia Symposium in Victoria, BC in 1999. I give it the same rave reviews you do.

With my newly-decrepit voice (much more non-functional than in Victoria), I was a little worried about socializing with attendees out in the open areas of the hotel, as we did in Victoria. This is wonderful. It resolves my fears. I plan to visit all the rooms but it makes me feel so good that there will be a room for people with SD. Others who understand vocal issues. Whoever thought up this idea of all the different rooms deserves alot of credit.

I have two questions. How long will the rooms be open? If only Saturday, I hope they'll be open at least until 7pm or so? Will they also be open on Sunday? Also, is Dr. Robert Campbell (our skilled webmaster) going to be there? I learned a few things from standing over his shoulder in Victoria. It was really fun to come home from Victoria, after a VERY long drive, and see all the new messages posted from people at the symposium who had never used the BB before.

This is great, David! Thank you so much. Looking forward to Miami.

Don't know the answer to either of those questions, but like you, I hope Bob will be there, and I hope the room is open as long as possible. Like Victoria, they may have the PC set-up throughout the symposium.

It's important, in the Internet Room that you and Anne will staff in Miami, that there's a place in the hospitality-room where BB-participants (both Dystonia BB and SD-BB) can sign in, so that we know who is there. It doesn't matter whether the participants are writers or readers on the BB.

I remember coming home from Victoria and finding out that other ASD-BB participants were at the symposium, but there was no way to know while we were there so we all couldn't meet.

Can you make a "BB-Participant Sign-in Sheet" available in that hospitality room? I'd like to meet other BB'ers in person, if possible. If people don't want to sign in, that's OK; but, if they do (want to sign in and meet others), there should be a place to connect.

I'll see what we can organise! I think that providing this room, in itself, will helps us meet up. It goes without saying that at a gathering like this we rely on those attending to wear their name badges!

... and that leads me on to a hobby-horse - the value of providing full names (first and last) on this bulletin board - makes communication so much easier when people relate to others in good faith!

Right. You and I and others provide full (first and last) names on the BB but I understand why some folks (especially women) may not want to. The world is a scary place. As a woman, that's why I use a PO Box for my physical address.

Also, re "nicknames" (or not full names) online...the new WeMove chat deals with nicknames, rather than e-mail addresses. As a host of that chat format on Tuesday evenings, I have no idea who people are. I sign in as "Lynne" but others sign in with nicknames (having nothing to do with their actual name) where we don't know who they are.

At the Maimi Symposium, wearing name badges is fine. I'll wear mine. However, how do we know who else is there, from the Online Support Group, unless they sign in? I've got bad eyes (presbyopia...the "over 40 short-vision syndrome") and I'm not going to be wondering around the halls of the Sheraton, getting two feet from someone's chest, trying to read their nametag. Also, I won't call around the hotel trying to find people unless I know they are there. There needs to be a place (in those hospitality rooms) where those of us who have been online can check in and say we are *there* at the Sheraton and at the symposium and we want to make connections. So others can find us.

Thanks so much for all your great work.