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Thread: Fighting for a cure

  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

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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. :-)

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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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    Best of luck Mama. I hope the surgery goes well and is as uneventful as going for your morning pee (is that a politically correct way of saying I hope it goes off without a hitch?)

    I thought that PJ's was a great way for people to have fun, make it easy and still make a statement. It's an easy one for schools to do. And I did it on Rare Disease day for a reason. Right now a huge percentage of the Autoimmune diseases fall under the Rare Disease umbrella (which is why we're so underfunded) but if they start to look for a common thread to all AI diseases, we would definitely benefit and there's enough of us as a group to push for that kind of research. I thought about just Vasculitis, but that's still a small group per capita, I wanted it to touch as many people as possible so that we can have a huge, strong wave of supporters. There are a ton of celebs with AI - once the momentum gets going, it can be them that bring on the tipping point. And ALL of us will benefit. I mean everyone, not just people with AI. We're (autoimmunies) are one of the biggest drains on the medical system, if a cure is found for all of us, there will be billions of dollars freed up from the medical system that could go to treating other diseases outside of autoimmunity. It really could be world altering. Can you see it? Twenty years from now, when we don't have to worry about our kids getting one because of their genetic predisposition. I also have a five year old, and I want her to live a long healthy life without the fear of some stupid autoimmune disease wrecking her life.

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    It is amazing how smart a six year old can be. That is so precious mama
    Phil Berggren, dx 2003

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    Marta, have you contacted the Canadian Immunedefiency Society about you excellent idea? Who knows they might like to join in. The American Autoimmune Related Disease Association (AARDA) had a link up with Vasculitis UK last year on the commonality of vasculitis in autoimmune patients, so they might be worth contacting as well.

    Unfortunately I am not be allowed to wear pj's to work. I have a very stuffy council who do not think that it is appropriate clothing for a taxi driver. So I hope to have a load of Vasculitis UK wrist bands that I will give to my passengers on the 29th - at least it will be some form of awareness.

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

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    Jim, I've contacted AARDA a few times but no reply thus far. Maybe I'm too much of a wild card for them to associate with me... who knows. I will contact the Canadian Immunedeficiency Society... I've looked and haven't been able to find a body that connects it all in Canada. I've heard a couple of docs tell me that the Arthritis Association is the closest and that was too restrictive for my vision. I want us all together. And after our first awesome year I'm sure we'll get a bunch of big guns on board for next year. It'll only get bigger and bigger and bigger.

    I went for a cross country ski today - it was only minus 3 degrees Celcius, sun was shining, and the entire world of snow around me was in a constant state of sparkling. It was truly magical. I used up all my spoons for the day in that one ski, but it was so worth it. I felt like I had one of those moments when you feel completely connected to everything and everyone - it was super cool and at that time I really felt like things are moving in the perfect direction. So I'm gonna keep on truckin... it's going to be fun talking to the highschool kids next week. I think they will be the true tippers.

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