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Re: Australia contacts?

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Hi Alison!

Welcome aboard! My name is Sharon and I'm a 38y/o adult with RSS. I

live in Orlando Florida, near Disneyworld.

There are at least 2 families on this list who live in Australia and

I'm sure one or both of them will be contacting you as soon as they

see your message.

-Sharon-

Just an RSS kid who grew up

> Hi there

> I am very new to this - my 14 mth old son Charlie was diagnosed

with

> RSS a few weeks ago. We live in Sydney Australia and I notice that

> most members are in the US. Is there anyone out there in Australia

> who I could chat to re Aust. resources ie doctors, therapists,

> clothing etc. Having read some of the messages though, am very

> comforted to know we are not alone with this, it seems very

> overwhelming at present! Thanks, Alison

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Hi Alison,

Welcome to our group. I hope we can answer all your questions.

There are at least a couple of people on the list from Australia --

Jody and ne.

Hopefully they will respond soon but often people don't check in for

weeks. Things just get too busy etc.

Again, welcome to our group.

Ken M

:)

> Hi there

> I am very new to this - my 14 mth old son Charlie was diagnosed

with

> RSS a few weeks ago. We live in Sydney Australia and I notice that

> most members are in the US. Is there anyone out there in Australia

> who I could chat to re Aust. resources ie doctors, therapists,

> clothing etc. Having read some of the messages though, am very

> comforted to know we are not alone with this, it seems very

> overwhelming at present! Thanks, Alison

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Hi Alison,

My name is and I live in New Zealand - so not too far away from

you!!

I'm sure Jodie will contact you soon - she lives in or near Sydney (I

think!)

If you are in Sydney are you under the team at Westmead? We

contacted Cowell there recently regarding our son - perhaps he

is the Dr you are under. If not, I can tell you he is very highly

regarded within NZ and Aus.

Our favourite dietician also relocated to Sydney a year ago - she now

works at Westmead too - maybe you will come across her - Barbara

Dennison.

My son, Finlay, is 4yrs 10mths he was diagnosed with RSS officially

last year at the convention in Chicago. We are under a fantastic

endocrinologist here in Wellington and have found that despite being

at the other side of the world the RSS experts are very accessible.

Our endo has been in email contact with Dr Harbison in New York and

Dr Stanhope in London.

You will find a lot of information on this list serve. I have found

being a member of this list very empowering...I have been able to

take all the information I learn here to the team in Wellington and

as a result I really believe Finlay is receiving the best care

available.

I do look forward to hearing more about you and Charlie.

All the best

> Hi there

> I am very new to this - my 14 mth old son Charlie was diagnosed

with

> RSS a few weeks ago. We live in Sydney Australia and I notice that

> most members are in the US. Is there anyone out there in Australia

> who I could chat to re Aust. resources ie doctors, therapists,

> clothing etc. Having read some of the messages though, am very

> comforted to know we are not alone with this, it seems very

> overwhelming at present! Thanks, Alison

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Hi Alison

My names jody, we live in Australia, not far from Sydney. My son

Liam is 3 and has RSS. I just wrote to your private email with my

phone number, hope we can speak soon, or if you prefer, let me know

and Ill write down all about Liam.

cant wait to hear all about your son

jody

> Hi there

> I am very new to this - my 14 mth old son Charlie was diagnosed

with

> RSS a few weeks ago. We live in Sydney Australia and I notice that

> most members are in the US. Is there anyone out there in Australia

> who I could chat to re Aust. resources ie doctors, therapists,

> clothing etc. Having read some of the messages though, am very

> comforted to know we are not alone with this, it seems very

> overwhelming at present! Thanks, Alison

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Hi Alison,

Welcome to the group.

I live near Batemans Bay, NSW.

My son is 17 now and use to attend Westmead Children's Hospital.

has been seen by both Dr's Cowell and over the years.

Do you go to Westmead or Randwick?

Feel free to email me at ade01@...

ne

> Hi there

> I am very new to this - my 14 mth old son Charlie was diagnosed

with

> RSS a few weeks ago. We live in Sydney Australia and I notice that

> most members are in the US. Is there anyone out there in Australia

> who I could chat to re Aust. resources ie doctors, therapists,

> clothing etc. Having read some of the messages though, am very

> comforted to know we are not alone with this, it seems very

> overwhelming at present! Thanks, Alison

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