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Thread: Fighting for a cure

  1. #21
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    Crazy how cancer gets most of the research funding of those 3.
    Phil Berggren, dx 2003

  2. #22
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    One little step further - baby steps forward.... The Fitzhugh - Dress for bed on Feb. 29

  3. #23
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    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!!

  4. #24
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    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

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

    Marta

  5. #25
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    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.

  6. #26
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    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.

  7. #27
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    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.

  8. #28
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    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.

  9. #29
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    Great job Marta and Mama!

  10. #30
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    Hi everyone.

    It was quite an amazing day in Jasper yesterday. If so inclined, visit 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"!

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