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Scleroderma Australia Forum!


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8 replies to this topic

#1 Shelley Ensz

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Posted 09 December 2010 - 11:57 AM

Welcome to our forum for Scleroderma Australia. We are thrilled to have Scleroderma Australia as an affiliate of the nonprofit International Scleroderma Network.

We are delighted to introduce Robyn Sims, President of Scleroderma Australia, as the host for this forum.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#2 Robyn Sims

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Posted 10 December 2010 - 11:48 AM

Hello Australia!

We are very excited to be a part of the International Scleroderma Network with our own Sub Forum page.

When diagnosed with a "rare" and chronic illess as scleroderma is, it is not uncommon to feel alarmed, confused and especially isolated. This forum is designed to give you knowledge and support, both mentally and physically.

I will be the moderator for this Sub Forum for the time being and there is always the opportunity for others to be trained as well. You will see from my profile the reason why I became involved in Scleroderma Australia. Our organisation is passionate in its endeavour to support our members and families, raise awareness in the wider community and to assist with research wherever possible. You can visit our website at Scleroderma Australia, just click on the link.


Thanks to Shelley for inviting us to join this network and to Jeannie who took me through the hoops in training as a moderator :happy1-by-lisa-volz:

Please browse this site and you will find a wealth of information. The posts will allow you to see the many ways this forum can assist with questions. Members gain moral support and feel comfortable in expressing their thoughts as so often we keep our feelings and fears tucked away from family and friends.

So Australia, let's join hands across the country and indeed the oceans by joining our cyberspace modern world!!

Look forward to making your acquaintence!

Kindest regards :flowers:

Robyn

#3 Jeannie McClelland

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Posted 10 December 2010 - 12:17 PM

Hello Australia,

All of the International Scleroderma Network members here (and here is all over the world!) welcome you as friends. Our goal is to provide good, reliable information about scleroderma and the scleroderma spectrum of illnesses; support and understanding. Whether you have scleroderma or a member of your family does, we are here to help. We laugh together, commiserate, sometimes cry together. One thing you can be sure of is that we do understand.

Posting on the forum is very easy, but if you have any difficulties at all, please let us know. On our home page you will find a link to a "Video Tour of SCLERO.ORG" that will give you an overview of how we can help you.

I look forward to meeting you all.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#4 Joelf

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Posted 10 December 2010 - 07:32 PM

Hello Australia.

Welcome to the Australian Sub forum!!

I'm really looking forward to meeting lots of new members through the International Scleroderma Network and also congratulate Robyn as the President of Scleroderma Australia and moderator of this exciting new forum.

Here's to many long and happy friendships! :VeryHappy:

Jo Frowde
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#5 Sheryl

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Posted 11 December 2010 - 02:35 AM


Robyn Sims, your Australian site is on its way up and onward. I'm am so happy we are getting so much new help with the ISN forums each year. I for one appreciate all our staff and the tasks they preform. We are behind you and will assist you however we can.

Strength and Warmth,
Sheryl

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#6 Amanda Thorpe

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Posted 11 December 2010 - 05:30 AM

Welcome Robyn and Australia to sclero forums! Here is a great place to be to meet others with scleroderma and discuss all things scleroderma!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

#7 Robyn Sims

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Posted 13 December 2010 - 12:12 AM

Hi Shelley, Jeannie, Jo, Sheryl and Amanda,

Thank you for celebrating the birthday of the ISN Australian Sub Forum! :jump-for-joy:

It's so comforting to know that you will be all supporting this forum and helping me find my feet.

:thank-you:

Robyn

#8 debonair susie

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Posted 16 December 2010 - 07:21 AM

Hi Australia!!! This is SO GREAT! I am so happy that you have your own sub forum.

Robyn, you are AWESOME...Congratulatiions! I wish you the very best, as this is quite a coups :emoticons-yes:
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#9 Robyn Sims

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Posted 12 March 2011 - 12:05 AM

Hi All,

After being an affiliate member of the ISN for a little over four months, I am pleased to say that it has been a great source of information for lots of us here in Australia.

Another huge bonus is being able to let all those here with scleroderma know about the events taking place as they come along.

This month we have been enjoying Support Month. We always called March Awareness Month, but as we are joining in with World Scleroderma Day on June 29, we now call it the Sunflower Support Month.

Queensland are having a Charity Golf day tomorrow and New South Wales have a Seminar. In Victoria our Sunflower Networks are holding gatherings. In total there are now nine groups scattered around the countryside!

We put together a kit of all those useful bits and pieces that make life easier when you have scleroderma, can openers, key holders, reachers, swivel cushion for the car to name a few. This kit has travelled round from group to group via Express Post, and to date it has arrived in time at each function. It is off to Tasmania next so we hope it arrives safe and sound.

Hope you are all in fine spirits :emoticons-group-hug: