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  1. #1
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    Default Fighting for a cure

    Some of you who I correspond with outside of here know what kind of shinanigans I've been up to, but I'll let the rest of you know in case you want to jump on board.

    I've decided that trying to fight for research for a disease that hits one in 40,000 is a bit like perpetually slamming your head against a concrete wall. Then I thought that we belong to a much bigger group of silent sufferers with not exactly the same symptoms but a similar process and the same underlying cause. People will respond if they think they're at risk and a disease that hits one in five people and has a genetic predisposition. Everyone knows five people so everyone knows someone with an AI disease. So I'm starting an awareness campaign which will be on the 29th of February. Find the Common Thread to Autoimmune Disease Pajama Day. In our town we will have a PJ run with Tracy Garneau (world utrarunning champion - she just won the Hawaii Hurt 100), we'll have a PJ ski race at the mountain, we'll have a PJ Fashion / Dance show in the evening and we'll have a late night PJ party at the local nightclub. There are numerous businesses who will don their PJ's for the whole day. I just did a guest lecture at the University of Alberta, and will go talk to our local High School students on the 13th. I just did an interview with our local paper and will get at least one more TV interview - possibly two. The Glenrose Hospital in Edmonton will have three units wear their PJ's on the 29th. People are getting on board from across the globe and doing stuff in their communities.

    So if you're interested and want to do something - step outside our WG box and get into a bigger family that can better push policy and social attitudes towards looking for a common thread, then all the better. I think a bunch of 'sick' people making something that could possibly change the world for the better is such a rush to just think about let alone when we are successful.

    Here's the site if you want more info www.findthecommonthread.com and I have a page on Facebook if you wanna hop on there. It's of course FIND THE COMMON THREAD. I look forward to seeing some of you in your PJ's in some super cool creative event. Don't feel bad if you want to but can't - I get it, I have days where I have absolutely no energy and I feel lucky that they're all not like that when I know that so many of us have those days more often than the good ones. You can just sit back and cheer us on - while you are wearing your PJ's.

    I think of you all every time I talk to someone about this, every time I approach a business to get on board, every time I send out an email for support and get no reply back - it's all of you that keep me moving in a forward direction.

  2. #2
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    Good idea Marta. Here in the UK there was a WG support group whose aims were general support and fund raising for reasearch. In the last few years it has changed name to Vasculitis UK with the same aims but covering a broader spectrum of related diseases and hence better fund raising prospects.

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

  3. #3
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    Quote Originally Posted by Dryhill View Post
    Good idea Marta. Here in the UK there was a WG support group whose aims were general support and fund raising for reasearch. In the last few years it has changed name to Vasculitis UK with the same aims but covering a broader spectrum of related diseases and hence better fund raising prospects.

    Jim
    Jim, this is all good. Marta's deal, though, is to extend past the financing of research, and go for as much public awareness as possible. My own view is that we need both, though private and government research funding may be more forthcoming with better public awareness.

    Al

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    My daughter is 6 years old and the other day she asked me how she can help find a way to make me better. We started thinking of ways that she could help raise money for the vasculitis foundation soo I saw your post on the pjs and our local schools are unifoms. I am going to go in and speak to the kids about rare diseases and then on the 29 of febuary on rare disease day they can wear their pjs to school if they make a donation which will be givien to the vasculitis foundation. My daughter is so excited to get to help. I told her unfortunatly I won't get to see her go to school in her pjs because I am having surgery the day before and will be admitted till the following day. But I am a very proud mother to have my baby wanting to help. :-)

  5. #5
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    Way to go Mama!!

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    Quote Originally Posted by BrianR View Post
    Way to go Mama!!
    I agree, Mama! And best of luck for a smooth and successful surgery.

    And thank you, Marta, for getting this idea rolling!

    Anne
    Last edited by annekat; 02-06-2012 at 04:17 AM.

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    Mamma2005, You should be a proud mother, what a wonderful daughter you are raising. Hugs to both of you.

  8. #8
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    So are you ready to laugh? OK then, cuz here is a list of the celebs I've contacted (I'm sure I'm going to forget some because I do it as the idea hits me)

    Montel Williams (MS)
    Venus Williams (Sjorgen's Syndrome)
    Missy Elliot (Graves')
    Shannon Doherty (Chron's)
    Toni Braxton (lupus)
    Lady Gaga (Lupus in family - pretty prevalent)
    Bobby Brown (lupus)
    DJ Snooze (alopecia)

    Oprah Winfrey (thyroid)
    The Elen Degeneres Show
    Dr Oz
    The Doctors Show
    Westjet Airlines
    Deepak Chopra

    there were a bunch more but I was in Edmonton and just did it without keeping track. I figure it absolutely can't hurt to ask. Worst case scenario is status quo and I can totally work with that.

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