INAUGURAL MEETING.
DYSTONIA SUPPORT GROUP
CAIRNS.
Saturday 24th February is our big day in Cairns to formalize our dystonia support group. We are meeting over lunch and watching the film Twisted. This film tells the stories about people with different kinds of dystonia, in their own words.
If anyone would like further information, please email me and I will get back to you.
Sue Bayliss. Cairns, Australia. s.j.bayliss@bigpond.com.au
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A supportive voice for those of us who struggle with voice and the many other forms of dystonia.
About Me
- Sue Bayliss
- Cairns, Queensland, Australia
- Hello and welcome. I have progressive multisegmental disabling dystonia consisting of laryngeal dystonia/spasmodic dysphonia; cervical dystonia/spasmodic torticollis; blepharospasm; axial dystonia in parspinal muscles. I advocate for people with dystonia and other neurological movement disorders.
Important sites
- Cairns.com will tell you what's going on in this part of the world. Go on, click and see.
- Dilbert (did you know that Dilbert's creator, Scott Adams, has Spasmodic Dysphonia? Funny that Dilbert does not have a mouth!)
- Dystonia Australia
- Imaginif Child Protection became Serious Business.
- Kidney Health Australia
- Raymond James. Cairns song writer and musician.
- Would you like to hear an ancient voice from the future? David Hudson is that voice.
Spasmodic Dysphonia and Cervical Dystonia Information
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Book written by my daughter Megan Bayliss
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3 comments:
Would be good to post the media release so that as many people as possible have the knowledge and an idea of how to get the word out to media.
I forwarded the media release on to two email networks and I've had it back three times. It's doing the rounds.
...and just another thought. Do you know about blog carnivals (a collection of posts about specific topics)? They come out weekly or monthly and bloggers can submit blogs to the upcoming edition.
You fit into several health carnivals ( http://blogcarnival.com/bc/clist.php?directory_id=15 )and it may be a good way to reach and educate medical bloggers.
Submitting the media release to a health carnival can only help all those affected by the disorder or misdiagnoses.
Megan, thank you for your always thoughtful support. When I read your comment I went straight into posting the media release as today's blog, the next blog following this one.
Yes, I will follow up with the blog carnivals but will be tomorrow.
Tonight is Darren's and my language class for Auslan, Australian Sign Language. We enjoy it very much but need to go over again what we did last week and read what we need for tonight.
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