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Scleroderma Australia


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11 replies to this topic

#1 Robyn Sims

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Posted 12 November 2010 - 01:54 PM

Hi,

My name is Robyn and I have just joined. Due to the generosity of ISN, Australia will soon have a Sclero Forums section for all our friends downunder.

I will be the moderator and I look forward to making contact with members.

A little about myself. My daughter was diagnosed with diffuse scleroderma in 1998 at the age of 26. Since then I have been an active member of Scleroderma Victoria, and for the past three years have been on the Scleroderma Australia committee. I was fortunate to be asked to represent Australia at the World Systemic Sclerosis congress in Florence in February. During the three days of the conference I met with so many wonderful people, all with the same passion about finding a cause and cure for scleroderma, raising awareness and supporting our members. There were over 1300 doctors and scientists in attendance, all presenting research papers and sharing their knowledge. Very uplifting.

Stay warm,

Robyn

#2 Shelley Ensz

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Posted 12 November 2010 - 03:30 PM

Welcome to Sclero Forums, Robyn! We are thrilled to have Scleroderma Australia as a brand new ISN Affiliate. And we are delighted that you, their new President, will be the main moderator for the Australian subforum, as soon as we get it going.

I'm sorry your daughter has diffuse scleroderma. I am very glad that you decided to do your utmost to tackle scleroderma.

Here are some welcoming flowers, just for you.

:flowers:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#3 Robyn Sims

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Posted 12 November 2010 - 04:38 PM

Thanks for your warm welcome Shelley.
Here's to a fulfilling relationsip with ISN
Robyn

#4 Jeannie McClelland

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Posted 12 November 2010 - 05:15 PM

Hi Robyn,

It's wonderful you and our friends down under will be joining us! Very exciting for all of us and we look forward to hearing lots more from all of you.

I'm so sorry about your daughter and hope she is doing well. Please give her a warm ISN from everyone here on the forums.

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

#5 Sheryl

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Posted 12 November 2010 - 11:40 PM

Robyn Sims, what a great thing to do for your daughter and all others with auto immune problems. Welcome to ISN and also to having your own forum to run. You are doing a great service for so many people and their families. It will be fun getting to know more about you and your daughter and Australia.
Strength and Warmth,
Sheryl

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#6 NorthStarHope

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Posted 13 November 2010 - 09:05 AM

Hi Robyn,

Guess you and I are kind of in the same boat. It is so hard to watch someone you love go through so much. My sister suffers from diffuse scleroderma and she has been through so much lately. I am so glad that you are here to speak with us. I have been doing all I can to bring scleroderma awareness to all.

Please take care.

Sincerely,

northstarhope

northstarhope* :emoticons-i-care:  :thank-you: 


#7 Joelf

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Posted 13 November 2010 - 09:28 AM

Hi Robyn

A very warm welcome to the forum to you and your daughter.

I'm looking forward to hearing a lot more from both of you.

Jo Frowde
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#8 Amanda Thorpe

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Posted 14 November 2010 - 03:57 AM

Hello Robyn

I'm so glad you made it here! Isn't it fabulous just like I said? Bearing in mind how far flung people in Australia can be, having this forum to enable them to communicate with each other is going to be so beneficial. Well done you! :emoticons-yes:

Take care and keep posting.
Amanda Thorpe
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#9 debonair susie

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Posted 14 November 2010 - 11:10 AM

Hi Robyn and welcome to you and all of the folks (in Australia, as well as elsewhere), who will be joining the ISN community, as a result of your desire to help others. It truly is a very rewarding experience!

How fortunate for your daughter to have you in her corner as an advocate :jump-for-joy:...I have absolutely no doubt that she is so grateful for you :)
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#10 janey

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Posted 17 November 2010 - 12:48 PM

Robyn,
Welcome to the team! Sounds like you've been a busy volunteer in many ways for quite a few years. Thanks for taking on other tasks by being the Australian rep as well as a Sclero forums support specialist. We're thrilled to have you as part of the team.
Janey Willis
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International Scleroderma Network (ISN)

#11 Helen

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Posted 28 November 2010 - 04:58 PM

Hi Robyn

Looking forward to the Australian forum :jump-for-joy:

Helen

#12 Sweet

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Posted 30 November 2010 - 10:29 AM

Hi Robyn, welcome! I'm excited this is happening. My son and daughter in law live in New Zealand. We have many members from that area.

:flowers:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)