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Scleroderma awareness


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#1 JohnLCanuck

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Posted 10 May 2008 - 11:15 AM

Hi everyone ~

Seems I've been reading, on various internet sites, about different events for fund raising and other means of adverstising for Sclero.

I'm in Canada & June is our "awareness month". We try for various levels of government proclamations, walks, billboard type ads and word of mouth thru friends, clubs, work & associations.

So I just got curious about what everyone else around the world is doing. (I feel like I'm on a mission) Please share your happenings with me, and of course, anyone else that reads this topic.


Hope you're all having a great day.

John L

#2 smac0719

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Posted 10 May 2008 - 11:51 AM

John,

I've been looking for local awareness or even support on the West Coast fo Florida for a couple of years now and can't find anything anywhere. I'm sure there are other sufferers around. I may have to start something myself! :D
I may have Scleroderma, but Scleroderma doesn't have me!

#3 CFMBabs

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Posted 12 May 2008 - 02:23 AM

Here in the UK we hold our awareness month in February.
The Raynauds And Scleroderma Association, of which I am a member, invite other members to spread the word, either by asking them to take part in a newspaper or magazine interview, or for the braver one's to be interviewed on local radio. Most media organisations will conduct interviews quite readily if it's for charity, and a good way of getting the message over is to place posters in doctors surgery waiting rooms or local hospitals.

The Association produces lot's of literature to help you answer questions or to get the point over without frightening people who may have just Raynauds and never knew there was a name for it! At the same time we encourage people to have blood tests to make sure that what they are experiencing is Raynauds. This has a double effect because the doctor should be aware of certain antibodies that are present with scleroderma -- this way the patient may get an early diagnosis!

The purpose as I said, is not to frighten anyone into believing if they have Raynauds, they will also have scleroderma!
I did a radio interview last year -- I was a bit nervous but once I'd overcome the nerves I was fine -- so fine that I now work in radio as a co presenter! How's that for confidence!

Best wishes to you all
Barbara xxx

#4 truman

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Posted 12 May 2008 - 03:37 AM

I am told by my rheumatologist that Robert Wood Johnson Hospital in Edison, NJ has a meeting in place. I don't attend, because that is about an hour or more ride for me and I can't do it at this time. I also see on this site, that specialists are located at UMDNJ which it quite close to me (maybe 30+ minutes), but I haven't felt the need to peruse that avenue yet.
Tru

It is what it is...........

#5 JohnLCanuck

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Posted 12 May 2008 - 11:55 AM

Hi Barbara:

This is great info. We, our BC Association, tried to get on to radio & TV a couple of years ago, but fell on deaf ears. Maybe it's time to try again.

Thanks for your input & continued good luck in you new radio life. :lol:

John L

#6 Shelley Ensz

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Posted 12 May 2008 - 01:26 PM

Hi John,

We have lots of awareness materials available through the nonprofit International Scleroderma Network (you know, SCLERO.ORG.)

We have brochures in several languages which can be ordered, or which you can print yourself for no charge. Our Scleroderma Awareness Bracelets are very popular and in big demand!

Remember to talk up the International Scleroderma Network and our fabulous Sclero Forums and Sclero.org -- everywhere you go!


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.

#7 GocartMoz

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Posted 12 May 2008 - 02:05 PM

Hi smac:

I am also on the west coast of Florida. There are some groups in Florida. If you would like to start anything new in the area to raise awareness and support, I would be happy to help out.

#8 CFMBabs

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Posted 12 May 2008 - 07:57 PM

Hi John

Try the smaller radio stations! I'm not familliar with how radio works in Canada but here in the UK we have local community radio and it's this kind of station that will listen to you!
As for the media press, again try the local news. Most community groups will go to local media to advertise their charity and I'm pretty sure they will help you if you approach them with lot's of literature and in the right manner.


If you want any help in contacting radio stations it might be an idea to quote what I've been saying. If I can of any further help, please don't hesitate to ask?

Best of luck and thank you for your well wishes

Barbara xxx

#9 smac0719

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Posted 14 May 2008 - 10:59 AM

GocartMoz,

Sounds great! I'll send me a PM with the group info and we can chat about starting one too if these don't fit our needs. Would love to know what rheumatologist you see as well. I'm getting ready to switch as mine has too many patients and it's hard to get in when you really need to.
I may have Scleroderma, but Scleroderma doesn't have me!