Fighting for a cure

[pberggren1]

Outdoor activities like skiing can be so exhilarating. I can hardly wait to get dilated and get walking again once the ice is gone. Marta, will your talk mostly be just on Wegs and your experience or Autoimmune stuff in general? I'm sure the audience will lear a lot. When I explain to most people what Wegs or Vasculitis is I get that glazed over look.

[Sangye]

Great idea, Marta!

[marta]

Thanks guys. I will talk to the high school students to pump them up so that they become activists for us. I will use the Wegener's thing to stress the point of how devastating and deadly an AI disease can be - that it doesn't matter how healthy of a lifestyle you lead, it can come at you from nowhere and because of lack of knowledge in the medical system or society at large has a pretty good chance to off you if you don't fall in the right medical hands. But I think if they become voices for autoimmunity my attempts will have been successful. I want to go in and inspire a bunch of teenagers to do something crazy, cool, creative to bring attention to this (within limits of course, I'll remind them they're speaking up for a bunch of 'sick' people so nothing too risque). If anyone has unlimited potential and voice way stronger than they even know, it's teenagers. They can rock the world on it's axis and I'll just go in there and remind them of that as well as that practicing being the instrument of positive change can start right now....when their voices are most powerful as a group.

[Nancy-S]

Reading ur last post gave so much energy! I might just get crazy and wash some dishes!

I sent a letter to Venus Williams last night. I'm sure its to late for this year, and she's going through treatment herself. Maybe next year if enough of us bug her (easy to write a message on her website) she may just jump on board next year.

[pberggren1]

I think we would be surprised to know how many famous people have Wegs or other autoimmune diseases.

[Dirty Don]

I want to go in and inspire a bunch of teenagers....when their voices are most powerful as a group.

Don't forget their parents...hit them where they are most sensitive: the providers. Either tell them, question them if any of their relatives have an AI, and, if you can, even demo, thru your self or better yet one of their parents or figureheads in the community, what WG can do to a family dependent on parents/providers. After all, teens are still pretty visceral!! LOL...so help them 'feel' what we and many others do...believe me, they learn faster that way.

[Lightwarrior]

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

[marta]

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.

[Nancy-S]

That's so great! As I typed it, I wondered if you had also written. Did you get a reply from anyone? Maybe with your new baking skills, we can send some pie?!

[marta]

ha ha ha Nancy, I was just thinking the same thing. Go back and just leave them some pie. I haven't heard back from any of the celebs. I did hear back from Westjet - but it seemed like a form reply. I also sent a bunch of stuff to variuos PJ sellers, and only Lands Down - ( I might have that written wrong - don't feel like looking it up right now) got back to me saying they will look into it further. It's ok though, this is the first year and I think I've got so many people on board already that it's kinda blowing me away already - the positive response. I think the celebs will get on board next year. I'll also have a ton of time to get them on board. I just decided to do this at the end of December so it's pretty good for the time limits I've self imposed.

Here's the pie that Nancy is talking about if you're curious. I'm a visual being and took the numbers from AARDA and put them in some pie charts. It's shocking when you see it. We're the sad blue pieces.
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