2013 OT Meeting Australia News!

June 22, 2013 - news and discussion

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admin
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2013 OT Meeting Australia News!

Post by admin »

OT meeting in Sydney Australia, June 22, 2013

Details are forming for an upcoming meeting in Sydney, Australia. Dr Julian Rodrigues will be attending the International Congress on Movement Disorders in Sydney Australia and has confirmed that he will be available to attend a meeting on June 22, 2013 in Sydney.

This meeting and it's conception are the results of the efforts of Sueb (thank you Sue!) and as more information becomes available we will post it here on the forum.

You can discuss the meeting here on the forum and also contact Sueb directly,
login on the forum first and then click on the link below -

click to send Sue an email

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Sueb
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Joined: Wed Jun 15, 2011 9:35 am

Re: 2013 OT Meeting Australia News!

Post by Sueb »

From sueb 13 March 2013
This is the message I have sent to the OT sufferers in Australia who had earlier made contact with me:

"Dr Julian Rodrigues is the recipient of one of the OT Forum’s NORD research grants. He is based here in Perth and has a research practise in Sir Charles Gairdiner Hospital here (Known as Charlie’s). He is also now “my” neurologist.

He will be attending the 17th International Congress on Parkinson's and Movement Disorders, which is being held in Sydney, June 16-20, and has agreed to participate in a meeting of OT sufferers in Australia on Saturday June 22 in Sydney. If you are interested, the link to the Congress is http://www.mdscongress2013.org/

I am willing to arrange the meeting on June 22, if you, and any other OT sufferers that you know, are interested.

The only OT sufferers in Australia who contacted me after the initial note on the Forum website are spread through the Eastern States and I am the only one in Perth, so it seems most sensible to hold our meeting in Sydney, and hope that several of you will be able to make it.

However, Dr Rodrigues says he has about 10 OT patients in his practise here in Perth, so we may not be so unique. He says he will publicise the meeting to them, and then we can see if any of them decide to come east too. We shall also ask his Sydney colleague, Dr Fung at Westmead in Sydney, to pass the information to his OT patients also.

We are going to put the information about the meeting on the OT Forum website, and send emails to all the OT Forum members, and we may find that there are other OT sufferers in Australia.

So, can you let me know if you are interested to come to a meeting on June 22? And if you are in touch with anybody else who would like to come?

I will then, with help from Dr Rodrigues’ colleagues in Sydney, locate a suitable meeting place. Our friends in the USA say they found it useful to extend the meeting over a full day and have a dinner both before and afterwards, so people could really get to know each other and share information.

Once we have a venue, we can investigate accommodation options. The group which is organising accommodation for the Congress is willing to help us too. I envisage that having identified some accommodation options, we would each book and pay for our own accommodation.

I look forward to hearing back from you"

Several of those in Australia who originally made contact have now responded - from Sydney, Brisbane, Perth, Hobart and South Australia :) - and most have said they are interested in attending the meeting. So I am now working to find a suitable meeting venue, preferably with some associated accommodation which is suitable for those of us with OT.

I have been asked whether spouses are welcome. Of course! And any body else, you want to bring along for support.

If you or someone you know would be interested in coming to the Sydney meeting, please let me know!
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: 2013 OT Meeting Australia News!

Post by Betty »

Hello Sue,

I just read your post regarding the meeting you are getting together for our Australian OT friends.

Having attended the very first meeting here in the United States at the Mayo Clinic in Rochester, MN., put together by Peggy, I can say it is so exciting to be able to actually meet and speak to others who also have OT.

It's also wonderful you will have Dr. Rodrigues there, since he is one of the two neurologists who received grant money from NORD, which was raised by people on this forum.

We will be looking forward to hearing all about your meeting in June; keep us informed and GOOD LUCK!

Betty
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: 2013 OT Meeting Australia News!

Post by gloria »

Hi! Sue and all our members in Australia & New Zealand:

Sue, I’m very excited to hear about your wonderful plans for a June meeting in Sydney for OT , an event where all who attend will be most grateful they did. Being with others who share this disease will be an experience that will take away the feeling of loneliness and give everyone a new inner strength of understanding of this bane in our lives..

Looking forward to continuing news about this upcoming event,

All the best, Gloria
admin
Site Admin
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Re: 2013 OT Meeting Australia News!

Post by admin »

There are currently 20 people + 7 spouses that are planning to attend the -

Inaugural Australia and New Zealand Meeting
Of The Orthostatic Tremor (OT) Community
Sydney Saturday June 22nd 2013


Congratulations and thank you to Sue for initiating, organizing and making this meeting come to life! I am sure that all attendees will have a great experience.

If you are interested in attending, Sue has sent the flier (links below) which contains all of the event information:

Link to Word DOC - to fill out form

Link to PDF - for viewing only
admin
Site Admin
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Re: 2013 OT Meeting Australia News!

Post by admin »

Hello Everyone

The following is information on the hotel. www.novotelbrightonbeach.com.au

Please go ahead and make your bookings, if you have not done so already. Our
booking code is MCI220613. They have quoted us $209.00 per room.

They have some disabled access bathrooms reserved for us, and the rest have
walk-in showers. But please tell them your particular needs when you
book.ie do you need a stool or chair in the bathroom?

In case of difficulty, our reservations manager is Graeme Lys I
Reservations Manager I Novotel Sydney Brighton Beach I Cnr. The Grand Parade
& Princess Street I Brighton le Sands NSW 2216 I Australia I +61 (0) 2 9556
5111 I Fax: +61 (0) 2 9556 5138 I * h1656-re3@accor.com

With very best wishes

Sue
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: 2013 OT Meeting Australia News!

Post by Betty »

Hello Sue,

I am so excited for all who live in New Zealand and Australia, that you have had such a good response to your upcoming meeting. I will be eager to hear all about it and hope someone will take notes, and some pictures, and post them to this site.

We here in the U.S. have been so fortunate to have Pat Whitney take notes and do such an exceptional job of posting for all to read.

Good luck!
Betty
Sueb
Posts: 20
Joined: Wed Jun 15, 2011 9:35 am

Re: 2013 OT Meeting Australia News!

Post by Sueb »

Dear Betty. We will certainly take notes, and are having the whole event professionally video'ed. we will then have it edited and put it on the website. Thanks for your support. Sueb
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: 2013 OT Meeting Australia News!

Post by Betty »

Hi Sue,

I attended the first meeting held here in the U.S.; it was at the Mayo Clinic in Rochester, MN. We also had a professional video made and Jeff put it on this site. He is the one who also put all the notes taken by Pat on the site....he is wonderful that way. I'm sure he will do the same for you after your "get together".

It is so exciting to meet and talk to others who also have OT. There may be many in attendance who have never seen nor spoken to another person with OT. You will be among so many friends who understand exactly what you are feeling ~ such an exciting time!

Enjoy your meeting!
Betty
admin
Site Admin
Posts: 543
Joined: Fri Jan 16, 2004 5:25 pm

Re: 2013 OT Meeting Australia News!

Post by admin »

An update from Sue, sounds like all of the plans are moving ahead towards a very successful meeting!
Hello Everyone

I’d like to update you on how things are going for our OT Forum meeting in Sydney on Saturday June 22.

Fourteen OT sufferers have committed to coming, along with six husbands/partners, which makes 20 participants. Three from NZ. And our neurologist researcher, Dr Julian Rodrigues, makes 21. So we are a goer! Interesting that all those with OT are women. I wonder if this is significant?

We have a conference room booked at the Novotel Brighton beach, in Sydney, and they will provide morning and afternoon tea and lunch, as well as audio visual facilities. We have booked a video professional, who will video our proceedings and then edit the video for use on our website.

Many of you have booked to stay at the hotel. Others will come in for the day.

Many of you have signed up for dinner on either or both evenings, preceding and following the conference. I will be in Sydney in May, for another conference, and will go to the hotel, meet the staff, and check out options for our dinners. Our Sydney participants tell me there are a number of good places nearby the hotel. I’ll update you on this later. If any of you Sydney people want to help me with the restaurant arrangements, please let me know! I’ll be staying in the city in May.

A couple of addressees on this email have not yet confirmed whether you are coming. There is still time to sign up!

And we have asked Dr Rodrigues and Dr Victor Fung, in Sydney, to pass the information to their patients, in case any of them is interested. Please feel free to pass information to your neurologists and ask them also to let their other OT patients know.

A couple of people have contacted me and said that they are very interested to know of the outcome and proceedings of our meeting, but, regrettably, they are not in a position to actually come to join us in Sydney. We send best wishes to you!

I have also had emails from Forum members from Europe, wishing they could join us, sending best wishes, and wishing there was a similar meeting for them. Perhaps the researcher in Paris might agree to participate in something similar, if someone in Europe wanted to organise a meeting. Peggy over there in Canada – any ideas?

A very exciting development is that Di Conway, who is coming from NZ, is an eminent sculptor, and is donating a small bronze sculpture, to be raffled/auctioned among all the OT members, world wide. The plan is to draw the winner during our conference. Thank you so much Di, for your initiative and generosity.

(additional information will be posted soon about the Di Conway sculpture)

So, arrangements in summary are :

Where? Sydney Brighton Beach, Brighton-le-Sands, NSW 2216. Room rate for us is $206 per night. http://www.novotelbrightonbeach.com.au Booking code is MCI220613

Conference fee of $200 per head.

I look forward very much to meeting you all in Sydney. I have never met anyone else living with this condition, so I am looking forward very much to exchanging notes and learning more.

With very best wishes,

Sue
Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: 2013 OT Meeting Australia News!

Post by Betty »

Hello Sue,

It appears you have everything under control and you should have a wonderful meeting. I am so excited for all of you.

It is so important to meet and be able to talk to someone else with OT. You will be able to compare notes and see just how much you are the same.

I look forward to your notes and videos after your meeting.

Good luck!
Betty
admin
Site Admin
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Joined: Fri Jan 16, 2004 5:25 pm

Re: 2013 OT Meeting Australia News!

Post by admin »

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Betty
Posts: 387
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: 2013 OT Meeting Australia News!

Post by Betty »

Hello Australia and New Zealand,

This is a GREAT poster/advertisement for your upcoming meeting. It won't be long now and I am so eager to hear all about it.

Did I read somewhere Dr. Russotto will be attending as well as other neutologists? If I were closer, I would try to attend; just too far away at this point.

Good luck and enjoy all who will be there.

Betty
Ann Dodd
Posts: 14
Joined: Sun Jun 28, 2009 12:27 am

Re: 2013 OT Meeting Australia News!

Post by Ann Dodd »

Hi All OT Members,
I am so looking forward to going to Sydney and thanks to Sue everything is so well organised.
It will be wonderful to meet other people with the same problems & hearing all there stories.
I am still taking Lyrica with excellent results.
Looking forward to Sydney and meeting new friends and I am sure everyone will advise you what the outcome was.
Take care all of you.
Ann Dodd- Brisbane Qld Australia.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: 2013 OT Meeting Australia News!

Post by gloria »

Hi! Ann: Oh! it is so good to hear from you again! I'm so happy you will be going to the meeting in Sydney...Meetings I keep saying " are the best medicine we have". It is good for our spirit and we feel stronger about managing our OT life because we know we are not alone. It has been a while since we have heard from you so when you get a chance please send us a post so we know how you have been .

All the best, Gloria
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