From an SD perspective we had a great presentation from Dr Joel Blumin yesterday. More later.

HI! Glad you both got home safely. Just arrived back from Miami one hour ago. Adrenalin-high at this point over an excellent symposium experience. So many ideas were presented as to what we can do in our own communities, re raising awareness and moving toward a dystonia cure, that I am numb at this point. Help! ~ need sleep.

The DBS examples (closer to a cure than our SD treatments, because they go to the source) presented on videos were the most inspiring.

Right. Reporting on Miami is a "more later" situation. There was TONS and TONS of dystonia medical information and support and opportunities to make new friends (with dystonia) who understand completely what we deal with. Nobody passing judgment on our disorder there.

I got on the BB upon arriving home as I'd been told (at the symposium) that some posters to our BB, over the past few days, had been very naughty, inappropriate and disrespectful on several related threads. I left on Wednesday but some folks who read the BB, who left on Friday, had read some ugly threads and reported them. I haven't seen these posts but, as I mosey down the pages, I hope they are gone. What I heard about is not productive for new patients, who truly need medical and emotional support (rather than "adult-comedy pot-shot one-liners"), coming onto this BB. I hope those posters have realized how mis-placed their comments were. Free-speech is not the issue. Goals of the BB are. Anyone can go start their own adult-comedy pot-shot BB if they want. It's a free country. ;-)

Many of us, who have posted on this BB for four years, have been trying to raise the level of information and patient support for people struggling with our severe vocal disorder, so folks can progress on their own cases. On the Bulletin-Board, we're trying to do the same things that the symposiums do, in a different way and a different forum. Humor is always encouraged (jump-starts the endorphins, which helps all of us deal with our disorder). We had alot of it in Miami. However, re the BB, I'm sure people who are trying to do patient-advocacy can distinguish between *humor* and *disrespect.*

Much was raised in Miami. Our knowledge level, our awareness, our inspiration, our number of friends and contacts who also have our disorder. Our world. Wish more SD'ers would have been there but we'll take care of that in DC in March. Hope everyone knows that these are "Patient-Symposiums" and people will learn more there than anywhere else. I am mega-motivated after Miami and hope we SD'ers can all gather together in DC in March and report on some large successes in raising money/awareness for a cure (or ideas to do such) and in building new support systems for patients who need help. A cure is in the not-too-distant future. Recent progress is very clear.

Cheers...and thanks to all other patients who inspire me (David and Mary, and so many others).

Thanks you two,

-- Lynne

The DMRF/NSDA asked Anne Brett and me to host an "Internet Connections" gathering at the symposium on Saturday afternoon. The staff provided a laptop with an internet connection so that we could show new folk what is available on the web for people with dystonia, including SD.

I was too embarrassed, and it would have not been representative, to show them this NSDA bulletin board at that time. Fortunately the threads that were out there 3 days ago aren't typical of the usual supportive and intelligent interaction on the SD BB. I thought the posts in the threads concerned were puerile rather than funny.

Anyone who knows Lloyd, Bill and me in person also knows that we do have a sense of humour. Bill's is droll, Lloyd is the master of the pun, and mine is so dry it is combustible.

Thanks to Lloyd for dealing with the situation at the time. Bill and I would have each handled it in a similar way if we had been on-line.