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Posted: Wed Apr 30, 2008 10:55 am
by Lake of the Woods
Hello everyone,
It is important now that we are getting more attention out there from the members to think about these items:


This is basically what steps I took:
1) Write to a Movement Disorder Neurologist that you know is knowledgeable in OT. In England I would be trying to contact Dr. Peter Bain probably. Ask him if you organized a meeting in his hometown would he come and give a presentation?

2) Establish a date and put a notice on the website where and when this will take place - give everyone about 3 months notice. I am sure Jeff will help you set it up to have a notice on the home page like he did for me.

3) I just set a date that people have to reply by - once I heard back from everyone who would attend I booked a block of rooms at a hotel and booked a meeting room for the presentation.

That is how easy it was!!! If you need any help I will be very happy to assist.

In this regard, when I was at the Mayo Clinic on Friday taking part in Clinical studies I was talking to Dr. Burnette who was in charge of this project and she happened to mention she was going to Australia in August for 1 year. I told her we are really trying to get support groups established in other countries and asked that if she could email me with the name of a Neurologist in Australia who would be willing to give a presentation to OT people there. She said she would so, people in Australia could either wait for her to get back to me or do "as above".

Contacting other Hospitals/Institutions to see what they are doing in regards to OT

I have been thinking that this would be a fairly easy thing to do also, if I could get a list of hospitals/institutions and addresses. I don't mind sending out the letters. I could tell them about our website, tell them how many members we have and ask if they are doing anything?

Also, if I "knew" where OT people were located I could say "we have approximately '5' OT people in your area and if you are interested or willing to do any clinical trials in conjunction with OT we have people that would be willing to participate in them.

ANOTHER REASON WE WANT EVERYONE TO LIST THEIR LOCATION!! Pls check your initial registration information to ensure that you have your "location" listed. Click here to find out how

Establishing Support Groups

If you read what I said about Dr. Matsumoto - he said by us getting organized and establishing groups it will help the medical community. Now that we have an established group and I have him for a contact, if he wanted anything from us all he has to do is contact me.

We can't sit back and wait for the medical community to "look after us" - we have to take steps and do what we can.



Posted: Fri May 02, 2008 7:26 am
by RichardS
Peggy - I think you sent me a message, but it got routed to my spam file, and deleted before I could rescue it. Could you resend to me please? Also I am trying to set up an email group for the UK members, but my posts don't seem to be getting through; any thoughts on this?




Posted: Fri May 02, 2008 8:01 am
by admin
>but my posts don't seem to be getting through; any thoughts on this?

Hi Richard,

Posts on the forum? there don't seem to be any problems. The only suggestion is to make sure the you click on "submit" instead of "save". "Save" will only save a draft of the document.