I received 2 long e-mails from Anne Brett (Dystonia) on the Leadership Meeting in Chicago held July 12-15. They were interesting to read but one point really stuck out....."Research is moving at a rapid pace and I do mean rapid!!! There is now talk of a cure within 2 to 3 years time. A profound statement was made by the DMRF President, Rosalee Lewis. I quote her when she said, "Time is quickly approaching when we will be able to say 'Dystonia Was' and not `Dystonia is'!""I hope this brightens up everybody's day. If anyone would like copies of the e-mails sent to me let me know as I have given my e-mail in this post.
June in Toronto
--modified by June in Toronto at Mon, Jul 23, 2001, 22:30:50
Re: Research News to Ponder
June - my doctor was at the same meeting,and he told us exactly the same thing at our support meeting last week. It is very exciting!
Shelley
Re: Research News to Ponder
June, thanks for that info. I attended our local San Diego Dystonia
meeting this past weekend and nothing was really mentioned about the research news. Our leader had attended and we also had a a visitor
who leads a group in Las Vegas. I did get the names of two recommended movement specialists--one in LA and one in San Francisco. Am currently working on that angle. We got some free samples of biotene for dry mouth--the gum, toothpaste, and mouthwash. Am trying those now. That also has been mentioned in previous posts. I will say that those who were at this meeting who have dystonia in larger muscles of other areas of their body take high doses of Botox(many are trying Myobloc) and also large doses of meds compared to our discussions on this board for blephs. Although some of us on the BB are affected in large muscle
areas--our moderator included. Keep thinking cure!!! Joanne M. San Diego,CA
Re: Research News to Ponder
June, I thought that was very interesting, too. I am tempted to be encouraged and hopeful.Sally in North Idaho
Re: SORRY FOLK I'VE LOST THEM!!!
Two people asked me to forward the e-mails to them and Netscape `went down' and I lost them as far as I know. If anybody would like to get copies of the 2 e-mails from Anne Brett please e-mail her atbrett@stic.net and I'm sure she will oblige. Sorry about that. June in Toronto
Re: I can forward mine
If anyone wants a copy emailed to them, you can
click on my name and I'll forward them to you.
Mindy
Re: Thanks
Thanks for sending that to me so quickly. It was very interesting and encouraging. I have to admit I shed a few tears over the possibility of a cure so soon. My youngest will start kindergarten in 2 years and it would be a miracle if I could be even "semi-normal" once again. I am also interested in the study on Botox and pregnancy since I received injections 3 times during my 2nd pregnancy with no harmful affects to her. Once again - THANKS!Kelly in Dallas
Re: Thanks
Dear Kelly - as a 1st grade teacher, I will be to support you when the girls go to school. I can give you all kinds of ideas as to what you can do as a parent to support your children and their teachers at school and at home.
Shelley
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