Happy World Lupus Day!

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Happy World Lupus Day!

Post by geoff on Sun May 10, 2009 2:03 pm

I'm just wishing everyone a happy & healthy World Lupus Day - and also a happy Mother's day for those around the world who are observing it - today, May 10.

I'm also aware it's lupus awareness month in the United States, so make the most of it!

For the rest of us, October is World Lupus Month - but there is a great deal of awareness to be made in the mean time. And I know we're all united in the search for awareness and a cure.

More importantly, we understand what others are going through.

Today is a day to reflect and to enjoy the fact you're not alone and there's support out there.

Regards as Always,
Geoff
The Wide World of Lupus
http://thewideworldoflupus.blogspot.com/
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Re: Happy World Lupus Day!

Post by Jenny on Thu May 14, 2009 6:39 pm

Thanks, Geoff.

You know, I didn't even realise it was World Lupus Day!! Hear zilch about Lupus, really.....

I have had a weeny look for a Lupus Group down here, rang the number in NSW Lupus Associations Newsletter but had no reply whatsoever.....

Was a very quiet Mothers Day for me....2 of the kids remembered!!!
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Re: Happy World Lupus Day!

Post by maidmaz on Fri May 15, 2009 9:18 pm

Hi Jenny and Geoff,

Jenny you are soooo right about there being zilch about Lupus here, sadly it's not Cancer/Breast Cancer don't get me wrong I'm not trying to take anything away from cancer sufferers, I would just love to see more recognition for us Lupies here in Australia!

Geoff if we were to put something together and raise money for Lupus Research where do you think the best place to send it to would be?

Take Care
Love and Hugs
Maz I love you
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Re: Happy World Lupus Day!

Post by Jenny on Sat May 16, 2009 3:16 am

Maz,

Just a quick reply as I am about to go out. If you have a contact with an Immunologist in Sydney (I used to see Prof. Dwyer but he is now retired), I am sure they would give some VERY good suggestions.

There is far more 'out there' on MS, too and Lupus is way more common than MS.........

Guess it 'serves us right' for having something that is SO complex and SO hard to diagnose...... all the other things are a lot easier to diagnose than Lupus.

Anyway, I shouldn't be here.....

CIAO!!!
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Re: Happy World Lupus Day!

Post by maidmaz on Sat May 16, 2009 2:31 pm

Hi Jenny,

Thanks, I will look into it! Enjoy your time with your brother.

Take Care
Love and Hugs
xxxMaz I love you
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Re: Happy World Lupus Day!

Post by geoff on Mon May 18, 2009 10:46 am

Hi girls and sorry for going missing - I'm half-way through moving to the Gold Coast.

I know what you mean about the lack of exposure down here in Australia. After the bike trip around the US, my main intention was to contribute to setting up a national organisation here - which we really need. If Mauritius and so many other countries have a national organisation, why don't we?

So I spoke at world lupus month seminars in Canberra and Orange last year to get the message across - but it's a long story.

And even while riding 14,000 odd kms around America, basically none of the existing state organisations wanted to 'milk' my efforts for funding or awareness.

Anyway, The LFA and the Alliance for Lupus Research in America were great and I still keep in touch with them.

Maz... The ALR funds research worldwide and they're backed by a fairly wealthy board who pay for all the operational costs - so every dollar donated is directed towards research.

As for here in Australia, I know there are dedicated scientists working towards a cure. I've been in touch with a professor at The Garvan Institue in Sydney and also know of others in Canberra.

But I think the biggest thing we need is a national organisation to get our message out there and hopefully the dollars and awareness will follow. I just like to stay out of the politics of it all.

Having said that, check out the photos of a World Lupus Day walk from Barcelona on my blog:

http://thewideworldoflupus.blogspot.com/

How much awareness would that simple long banner make in a walk through Sydney, Adelaide or Melbourne? (with a few journo's and a photographer tipped off in advance)

As always... Geoff
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Re: Happy World Lupus Day!

Post by Poppy on Tue May 19, 2009 5:29 pm

I have witnessed a commercial here in Atlanta a few times about Lupus, recently.

It shows a young woman sitting on her bed brushing her hair and her hair falling out - she is asking why is this happening - the next statement is "Could she have lupus?". I can't believe that this is the only symptom they show - but at least it brings some awareness. Smile

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Re: Happy World Lupus Day!

Post by geoff on Thu May 21, 2009 1:27 pm

Hi Poppy!

I understand...

Without seeing the commercial, it does seem to come from 'a different angle' in ad-speak.

(I've been told that many such ads in the US fill a quota in a community announcement situation - and they don't exactly have a huge budget to work with)

But hey... it will probably end up on Youtube and then forwarded to thousands.

But as you say, at least lupus is mentioned - with that comes awareness.

Believe me, it's a long road - but everything helps.

I hope you're doing well and best wishes to all,

Geoff
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Re: Happy World Lupus Day!

Post by Jenny on Sun May 31, 2009 5:48 am

I guess it is one of the 'outwardly obvious' signs (apart from rashes) that a person would notice. I know if I didn't have SO MUCH hair (LO) you would have been able to see my scalp....

At least it gives people the heads up on Lupus.
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