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World Scleroderma Day


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#1 Robyn Sims

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Posted 18 July 2011 - 08:04 AM

Hi All,

I wonder how many of you saw news articles or saw posters and pamphlets at your doctors rooms, art galleries, clinics and community health care centres.

As this is only our second year being involved in this special Day, we are feeling our way in the best way to raise awareness in the general community.

This year the family of one of our members all gathered to take part in a Fun Run in Melbourne. They all wore Scleroderma Victoria T Shirts. Eight adults and three children, with the pram adorned in our emblem, the sunflower.

If anyone has any ideas how we can further raise awareness we are always happy to receive your input.

In the meantime hope you are all going well, as well as can be during this cold season. I think it is half way through winter now, so only six weeks to Spring.

:emoticons-group-hug:

#2 TazzaP

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Posted 11 June 2012 - 12:21 AM

Hi, I am just wondering if there are any events this year in Melbourne?

Thanks
Tarryn

#3 Robyn Sims

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Posted 11 June 2012 - 01:01 AM

Hello Tarryn,

Welcome to our ISN sub Forum.

I am pleased that you asked about what is happening in Melbourne for this World Scleroderma Day on June 29!

I have just finished speaking with a wonderful girl who had a stem cell transplant in June last year and am doing my best to get an article in The Age. We also have another young lady who would be willing to be interviewed. It is not easy to get publicity, as we have found over the past seven years, since I have been involved with Scleroderma Victoria, but we have had articles in small newspapers.

We have a Walk for Scleroderma which is under Everydayhero.com. This is part of the Melbourne Fun run. The walkers will be wearing T Shirts with our logo to help raise awareness.

We will have several displays at two major hospitals in Melbourne giving out information about scleroderma and some of our country support groups will be catching up for this day. As the day originated in Europe and was chosen because of the Swiss artist Paul Klee, who died on this day in 1949 due to scleroderma, it coincides with our Winter, unfortuantely, making it very difficult for our members with scleroderma to help with awareness raising.

We have sunflower pins and pens with information on attached cards, which we have sent to quite a few people around Victoria, who are keen to have their own stall in shopping centres etc., to help with this awareness raising.

If you go to our website you will find the brochure we produced last year and we are distributing these to all Community Health Centres with flyers to display. If you would like to do something yourself, please register through our email address [email protected] and we can send you brochures, pens and pins.

I hope this covers everything. I am so busy at the moment I hope I haven't forgotten anything.

Kind regards

#4 Nia

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Posted 21 June 2012 - 03:46 AM

Hi All,

I am the lucky daughter of Robyn Sims, who works tirelessly to support we who have scleroderma.

I've had SSD for 13 years. Mum, this is just to thank you for your endless hours of work and to encourage people to post something on their Facebook Page about World Scleroderma Day to help raise awareness to the wider community!

Nia