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marta
02-05-2012, 06:28 AM
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 (http://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.

Dryhill
02-05-2012, 01:10 PM
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

Al
02-05-2012, 03:52 PM
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

mama2005
02-06-2012, 02:26 AM
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. :-)

BrianR
02-06-2012, 02:47 AM
Way to go Mama!!

annekat
02-06-2012, 03:52 AM
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

marta
02-06-2012, 04:34 AM
Best of luck Mama. I hope the surgery goes well and is as uneventful as going for your morning pee :wink1: (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.

pberggren1
02-06-2012, 07:11 AM
It is amazing how smart a six year old can be. That is so precious mama

Dryhill
02-06-2012, 10:24 AM
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

marta
02-06-2012, 12:47 PM
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.

pberggren1
02-06-2012, 12:59 PM
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
02-07-2012, 03:12 AM
Great idea, Marta! :thumbsup:

marta
02-07-2012, 04:41 AM
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
02-07-2012, 05:57 AM
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
02-07-2012, 07:27 AM
I think we would be surprised to know how many famous people have Wegs or other autoimmune diseases.

Dirty Don
02-07-2012, 08:43 AM
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
02-07-2012, 09:19 AM
Mamma2005, You should be a proud mother, what a wonderful daughter you are raising. Hugs to both of you.

marta
02-07-2012, 10:45 AM
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
02-08-2012, 01:21 AM
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
02-08-2012, 04:02 AM
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.
1538

pberggren1
02-08-2012, 05:35 AM
Crazy how cancer gets most of the research funding of those 3.

marta
02-10-2012, 04:52 AM
One little step further - baby steps forward.... The Fitzhugh - Dress for bed on Feb. 29 (http://www.fitzhugh.ca/news/5984-dress-for-bed-on-feb-29)

Kami
02-10-2012, 05:49 AM
I think what you are doing is great!! I just recently heard about the Rare Disease Day. I am just getting our local VF chapter going, our first meeting is the 25th of February. I do not think I can take on another project right now, I am stretched very thin. I was thinking that we could get our group involved next year. We will be well organized by then and have a whole year to plan. We could not wear pj's to work where I work but I could organize something in my town maybe. Maybe I will think about that more tonight and see if I can come up with something to do in town and get organized in less than 3 weeks! You are awesome! Keep up all of your hard work, you are one fighting for many!! Thank you for fighting for me!! Cheers!!

marta
02-28-2012, 10:47 AM
Well, just coming up for a breath and thought I'd remind you to put on your PJ's on Rare Disease Day to raise awareness for Autoimmune Disease. Here's what's happening in our town. It is so overwhelming the support that has exploded here... it's unreal. If this is our first year imagine what year two and so on will be like... I think many people have been waiting for someone to give them a reason to stand up and be noticed...

Find The Common Thread - Find The Common Thread (http://findthecommonthread.com/)

See you in your PJ's my wonderful Weggie Friends.

Marta

mama2005
02-28-2012, 07:18 PM
Went and spoke to my daughters school last week about autoimmune diseases. It went very well. The first graders have to write their very first reports and the teacher is making them research something in the medical field. My daughter is going to do wg. I tried to talk her into something simple but she of course said she wants to understand the wg so she can cure the wg. I love my baby. She is pumped about getting to wear her hello kitty pjs to school tomorow and to see how much money the school can raise to help funding for ai diseases. She says we need to think bigger next year. I am sure glad she has the energy to think big.

marta
02-29-2012, 03:33 AM
Mama, that's so cool. Take some pics and add them to our collection of PJ pictures (I'm gonna figure out the most efficient way for people to post their pictures in one place today) I also have to write a speech for the Fashion Show, and design the programs for the show. Otherwise everything seems to be functioning on it's own - just like I was hoping... it's taken on a life of it's own here in Jasper. I'd say at least 50-60% of the businesses are wearing PJ's tomorrow - the schools were caught in a conflict as they had committed to wear pink shirts against bullying, but my friend's kids and mine of course will wear pink shirts and PJ bottoms. I'm totally blown away at how big it's gotten in our town, and the events keep pouring in. Just yesterday I found out that the Senior's Lodge is having a PJ BBQ lunch - staff and residents, so from the very young to the very old, everyone's on board. I'm thinking like your daughter, if it's this big in our town this year, next year it'll be crazy. I'm doing a radio interview first thing in the morning tomorrow that will be heard throughout the central northern part of our province, not much I know, but the momentum is sure building, and of course I get to speak about Wegener's, Rare Disease Day and then the big picture Autoimmunity, so indirectly we get our message out and get a ton of support from people who can relate navigating through the medical system (which is what I'm likening our ski race to - it wont be a traditional course, it's going to be windy and twisty and not what you expect - Brian's setting it up, and he's the best course setter in town - I can say that here because nobody who'd get offended would read this post - ha ha).

I'm going to wear a GoPro on my chest all day (a sport video camera for those that haven't heard of it) and take video of the days events. I'll post it somewhere afterwards so you can see how many people are backing you, me, us up.

Take care friends, and have a great day. Wear your PJ's tomorrow so we're not the only ones not wearing any - wouldn't that be funny. I'll let you know if I've survived the day.

Geoff
02-29-2012, 08:22 PM
Brilliant work Marta,

With a collective shove across the world, this will lead to a bigger understanding of all AI illnesses and eventually 'the common thread'
I spread ther word whilst I was in Addenbrookes yesterday being infussed, in fact I tried to infuse the rest of the staff and patients with your web site, enthusiasm and activity!
Apparently RDD is being featured heavily in one of our broadsheet papers today so will ask my wife to pop up the shops for a copy for me. :wink1:

eileenv
03-01-2012, 12:34 AM
Well done Marta, for raising people awareness of AI illnesses, also mama 2005 and her daughter. My nieces daughter has Ehlers -Danlos-syndrome which effects her gut mobility and is peg fed and also Autonomic Dysfuntion, she is 16 years old and from a baby where she had great problems feeding. It wasen't till she turned fourteen that she had a diagnoses, all those years she was in and out of Great Ormond Street Hospital and never getting a diagnoses.

Sangye
03-01-2012, 05:02 AM
Great job Marta and Mama! :thumbsup:

BrianR
03-02-2012, 07:34 AM
Hi everyone.

It was quite an amazing day in Jasper yesterday. If so inclined, visit www.findthecommonthread.com (http://www.findthecommonthread.com) and also check out the Facebook group, Find the Common Thread. Lots of photos from yesterday's Pajama Day events. As one oberver noted, "It looks like a scene from Dr. Suess out here"!

Geoff
03-06-2012, 01:45 AM
Yes great work Brian and Marta,

Really enjoying all the photos from Jasper and the boundless energy and enthusiasm which comes across.
The Independant newspaper here in the UK carried a 16 page pull out section on the 29th and I called the editor who had been overwhelmed by the positive response from everyone.
The Goverment have also brought out an initiative which I will try and post a link to when I can sort that out!!

drz
03-06-2012, 10:13 AM
Does Cindy have dogs in the Iditarod that we should be following or cheering on?

Al
03-06-2012, 01:37 PM
Does Cindy have dogs in the Iditarod that we should be following or cheering on?
She did say that her mentor, Lance Mackey, might be running some of her "pups".

Marta: The photos are pretty nifty. It looks like you really jazzed Jasper--congratulations!

Al

Al
03-06-2012, 01:37 PM
Yes great work Brian and Marta,

Really enjoying all the photos from Jasper and the boundless energy and enthusiasm which comes across.
The Independant newspaper here in the UK carried a 16 page pull out section on the 29th and I called the editor who had been overwhelmed by the positive response from everyone.
The Goverment have also brought out an initiative which I will try and post a link to when I can sort that out!!

Geoff, this would be interesting to see!

Al

Geoff
03-07-2012, 11:30 PM
OK Al,

Your wish is my command!!

UK Plan for rare diseases consultation launched | Department of Health (http://www.dh.gov.uk/health/2012/02/consultation-rare-diseases/)
www.dh.gov.uk (http://www.dh.gov.uk/)

Al
03-08-2012, 12:08 PM
OK Al,

Your wish is my command!!

UK Plan for rare diseases consultation launched | Department of Health (http://www.dh.gov.uk/health/2012/02/consultation-rare-diseases/)
www.dh.gov.uk (http://www.dh.gov.uk/)Thanks, Geoff! (Yikes--I'd better be careful what I ask for!)

This is all very interesting. I'm glad that championing rare diseases is becoming official. But it points up a conundrum. We need experienced specialists to make and confirm diagnoses, but we need widely intelligent generalists to know how (and when) to direct patients to such specialists. Indeed, there needs to be close interaction between specialist and generalist, lest the diagnosis fall under what I call the lamppost syndrome: The tendency to look for your car keys (a solution to a problem) under the street lamp (i.e., under the terms of your own specialty), because the light is better there. An interesting problem...

Al

marta
03-09-2012, 03:29 AM
Hi gang, thought I'd share this here first since you're my first family of compatriots within this context. Here's what the local paper in Jasper wrote up on the PJ Day. I'm also writing a guest blog this week for AARDA where they are keen to make PJ Day the launch event for Autoimmune Disease Awareness Month next year.

Here's the editorial of this week's paper: The Fitzhugh - An overwhelming, if not surprising success (http://www.fitzhugh.ca/editorial/6052-an-overwhelming-if-not-surprising-success)

and here's the story which in the paper is surrounded by photos of the day's events but doesn't come up on line: The Fitzhugh - PJ Day success an overwhelming experience (http://www.fitzhugh.ca/newsflash/6042-pj-day-success-an-overwhelming-experience)

I've also been fighting with editing the video of the Fashion and Dance show, but I'm using software that I've never used before and it's fighting back. I thought I had it done yesterday but alas, it won again. I will get it done and will post a link on here so you can see what an amazing night it was with the dancers and the models and the huge audience and me on stage making a fool out of myself.

It's been such a rush and I've learned so much about our common illness where there is as much commonality as differences.

annekat
03-09-2012, 04:43 AM
Marta, those are two really excellent articles about your great effort and the wonderful result. They were a joy to read, and I am really impressed. Now, if this Pajama Day takes hold in the US, I will have to go out and buy some pajamas! I will do so with pleasure.

Anne

Al
03-09-2012, 12:37 PM
I love small town newspapers. Too bad the photos don't transfer, but to see Marta herself modeling her PJs, check out:

The Fitzhugh - Dress for bed on Feb. 29 (http://www.fitzhugh.ca/news/5984-dress-for-bed-on-feb-29)

Ah, the joys of video editing. That learning curve should keep you out of the alleys for a while, Marta. You can give us a sample of your new skill when you come up for air.

Al

annekat
03-09-2012, 01:51 PM
Thanks, Al. Another great article and a great pic. Love the moose PJs.

Anne

Lightwarrior
03-10-2012, 07:02 AM
Marta,
I was able to open it. I noticed that the editor called PJ day a "stroke of genius". Well, I think that sums you up Marta, you are the stroke of genius. Congratulations and I am might proud to know you.

marta
03-10-2012, 07:30 AM
Ah, the joys of video editing. That learning curve should keep you out of the alleys for a while, Marta. You can give us a sample of your new skill when you come up for air.

Al
It beat me Al. I've been fighting for days and finally after rendering it a dozen times at about 50-60 minutes each time and there was yet another glitch in the final video, I gave up, transfered it to my own computer and did am doing it in bits on Microsoft's video editor. Boring, but now you can see it. Here's a link to the fashion show part of the evening - fashion show - YouTube (http://youtu.be/E86o79_g4Y4) and this is a video of the Grade 9 Girls Dance program - Find the Common Thread Fashion and Dance Show - Grade Nine Jasper Dance Program - YouTube (http://youtu.be/Jx5yaDBLsy4) doing their thing in their PJ's. I have more video to come, but this is a great sampling.

Thanks you guys. I'm super stoked about how the town I live in jumped on board and made a first year thing feel like it was a little older. Now I have a whole year to plan it should be fun next year. Other stuff to do in the meantime though. Weeeeeee.

Big hugs.

drz
03-10-2012, 01:28 PM
Loved the style show and the antics of the models. :w00t: What was with the baskets and potatoes?:confused1:

Loved Hannah's attempted early exit too. Very enjoyable video and thanks for sharing. You could see everyone was having a good time. great job!!!:thumbsup::thumbsup:

marta
03-10-2012, 02:37 PM
Ha ha, thanks drz. It sure was a fun night. The potatoes were actually lemons... my sister really likes the song in the background 'If life gives you lemons, make lemonade'... hence the lemons - that's why I had a whole armful - ha ha ha. Hana's totaly into performing, but the stage made her nervous, as it did me. Here's me introducing the whole thing at the start of the night. I had a hard time keeping the tears in check. https://www.youtube.com/watch?v=aeY9yvIykNI&feature=BFa&list=UUH3ybfOcg2OL-04beERLlSg&lf=plcp
(https://www.youtube.com/watch?v=aeY9yvIykNI&feature=BFa&list=UUH3ybfOcg2OL-04beERLlSg&lf=plcp)
Here's one more of the two girls doing a duet dance - is that what you call it? Here it is - https://www.youtube.com/watch?v=gWmNjAf9bkc&list=UUH3ybfOcg2OL-04beERLlSg&index=1&feature=plcp
I only have one more from the evening show, but I have quite a bit of video of the day, which I'll post on later. It was such an amazing day.

Al
03-10-2012, 05:06 PM
Great intro, Marta, and, from the evidence, heartfelt. Lemonade, indeed; you soared!

Al

marta
03-12-2012, 07:02 AM
Thanks Al. It was such a magical evening. I already have ideas to make this absolutely insane next year. I am sure you have some too. I think the trick is for people to come up with their own ways of making somethign PJ happen within their circles and interests. That's what happened here in Jasper and it was what made it work. People just jumped on and said "Oh I can do a PJ yoga because I have a yoga studio", "I can lead a PJ run because that's what I do, I run for hundreds of kilometers", "I can do a PJ ski race because I've organized a million ski races in my life" - it was brilliant. I will keep doing what I did the previous two months before the event, but now I have a whole year to irritate people. I sent out hundreds of emails to get people on board, but now I have some proof that this can be done and it can be fun and it can get the discussion going, so I will start sending out emails again to get people on board who can multiply and amplify our voices. Already there is a TV station who wants to be here next year for the entire day's events.

By the way, I have to share this with you because it's quite something. I'm looking out my windows and it's snowing so hard with the biggest, most beautiful, sound muffling snowflakes in the world. It's like billions of white butterflies flying in all directions. I wish you were all here right now to see how special this moment is right now.

pberggren1
03-12-2012, 07:05 AM
This could easily go global next year. I thought this was very cute and well done.

We barely got any snow this winter. I love snow. Right now it is about 16 degrees here.

drz
05-18-2012, 09:38 PM
Any one on here belong to AARDA or keep up with their publication? I just got a copy of their march newsletter and there is considerable info in the letter called INFOCUS about studies on autoimmune diseases and efforts to raise awareness of autoimmune disorders. I like the "We are 50 MIllion" theme. and the goal to end the question "What is autoimmune?"

Some of the highlights in this issue were a possible cure for Type 1 diabetes using BCG done at Mass General Hospital, Malmo University research on blood clots following hospital stays, for AI patients, a potential treatment for sclerdoma, Raynaud's disease, how MHCs make us vulnerable to infections and autoimmune diseases, how inflammtion increases our risk of bone fracture even without the steroids, a resource for info on complimentary and alteranative medicines (www.nccam..nih.gov/), a book about a brave and persistent mother who saved her son from PANDAS, a study on how NSAIDS might increase our risk of Crohn's disease, Speira's study on how stress is bad for people with vasculitis, a study on Rheumatology that some biologics do not increase risk of infection as much as thought, a possible treatment for Takayasu's arteritis, risk of miscariages in AI or AD patients, a study on treating lupus in children at University of Liverpool, (38 % of children had family history of Autoimmune Disorders), and info on how givenik.com customers can donate 5% of ticket costs to AARDA when shopping for
Broadway shows in NYC, and info on several walks to increase awareness.

AARDA sounds like a very small organization but one with a great goal of helping people with autoimmune disorders. Any members one here?


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