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PostPosted: Tue Nov 06, 2007 2:03 am 
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Joined: Tue Nov 06, 2007 1:48 am
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I would love to know, and get working on this.


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PostPosted: Tue Nov 06, 2007 7:48 am 
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Joined: Tue Mar 22, 2005 11:17 pm
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Location: Ottawa
MammatoRya-Great! This must seem like a daunting task but why reinvent the wheel?

First of all, why don't you check out the topics under Support Groups? You may find that there is one already in your community.

If there isn't, check out the Anaphylaxis Canada website that offers tips on starting one. http://www.anaphylaxis.ca/content/progr ... upport.asp

Good luck and remember, you are not alone. Statistics show that there are others in you community who also have this concern and I'm sure they would be happy to find a group.

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Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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PostPosted: Tue Nov 06, 2007 7:17 pm 
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Joined: Mon Feb 07, 2005 6:39 pm
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Location: Toronto
Great question. As Susan suggests organizing a Sabrina's Law starts with finding like-minded parents willing to lobby the gov't.

Cindy Paskey, who lobbied for several years for the Ontario Law, also always suggests finding a political "champion" - a legislator (preferably with the current gov't so he/she will have more clout), who's willing to help bring this forward in the political arena.

I'd suggest having a scan through some of the organizing done in B.C. that started with this forum. Essentially a few determined mothers in British Columbia started talking to each other here, trading ideas. Then they set about starting a media campaign (getting attention for anaphylaxis through compelling personal stories), this snowballed into an online petition, meetings, an organized group (called PACT), and ultimately a rally with a few big speakers to attract the media.

As this all started getting the gov't's attention, they also worked closely with the anaphylaxis groups such as AAIA (which had been lobbying the province for years) and Anaphylaxis Canada.

With Sara Shannon speaking at the rally about the death of her daughter (and another girl having died in B.C. of ana.) the pressure and the awareness built. After the rally, the gov't created a task force of experts. Out of that was born B.C.'s new framework (it's a ministerial order; just short of a law, but does have teeth). The rally was in May, the framework completed in September. If that doesn't encourage you that a few determined parents can make a difference ....

Perhaps Caroline, Tracy, Pam or Nancy would care to weigh in on this - given their recent personal experience becoming "anaphylaxis law advocates".

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Allergic to soy, peanut, shellfish, penicillin


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PostPosted: Tue Nov 06, 2007 7:26 pm 
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Joined: Tue Nov 06, 2007 1:48 am
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This is all so encouraging, I am really interested still in getting something going for the Yukon. I'm sure there isn't anything like this here and we need it set in stone.


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PostPosted: Tue Nov 06, 2007 7:35 pm 
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Yes, and one of the big arguments in the Yukon is the distances that are covered to travel to school in many instances.

It becomes essential that bus drivers in particular are trained/briefed.

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Allergic to soy, peanut, shellfish, penicillin


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PostPosted: Wed Nov 07, 2007 9:47 pm 
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Joined: Thu Aug 24, 2006 1:42 am
Posts: 222
Location: Victoria, British Columbia
Gwen is absolutely right that we met here on the forum! I was looking for tips on how to get more support for my son in his classroom. I was really feeling as if he was not getting proper positive attention (to say the least) and then, when there was an incident in the class (an intentional topical exposure) I knew things could be better. Here is some of the arguments I was running into:
http://www.allergicliving.com/forum/viewtopic.php?t=1380

So online here I found people in my area. We swapped stories and emails, and then realized that things had to change. I had spoken to my child's school principal and the associate superintendents of our school district, and then the health authority but it just wasn't enough to make change in our area. I kept pushing and pushing and so, just about one year ago right now, one mom and I got an appointment to meet with some key players who could change the policy to protect kids with allergies. This meeting mainly stressed how worried we were that the district policy was simply not enough. It is hard for me to relive, but here is the link to that discussion and all the planning that went into it.
http://www.allergicliving.com/forum/viewtopic.php?t=1581
(it is described on page 3 of this thread. . . but the letter that was edited in the post is now pretty much the info letter that goes home to all the families in our school district, which shows the impact of this forum!)

From there we parents got a number of meetings with the health authority and school representatives to review the policy. We went through it bit by bit (not always easy because they were not really keen to change it) and we pushed for additions, expansion of information and greater awareness in the policy. We did not get everything we wanted, but we got a bit. So although we were very careful to not upset this delicate conversation. . . we still kept writing the Ministry of Education and our politicians to see if they could do more for us. We also kept on connecting with people who had similar experiences in their schools all over the province, not just in our district, so we widened the net, so to speak. I was really active on this forum (I scrolled through the member list looking for people in my area) as well as at any other venue I could think of. I sort of peaked when I spamming every single one of my email contacts -- and that is when my loving husband said I needed to breathe a little and so he put together a website for our discussions. Although the discussion part coming down soon -- Allergic Living does such as super job -- you can see us here: http://pactbc.org/ -- it has some specific info on our efforts to organize. And it gave my husband a venue to support me when I was getting a little bit overwhelmed by the whole thing. Oops. :oops:

Then, in the midst of all of this, seemingly out of the blue, our political angel, opposition Education critic David Cubberley approached one of the moms in our group to let us know that he was going to table a bill based on Ontario's Sabrina's Law. BC Mom had written him a while back as well as through our efforts in our district and drew his attention to it. Now he was keen to support us. Going this way -- supporting HIM -- did close some doors to the gov't in power (no more emails or letters to us!) but man, did we take advantage and stir up some media around it. And it made our issue of protecting kids with allergies a political one that the government could not disagree with. Initially I thought this a bad idea but it ended up that it was just what we needed. And so, while we don't have LAW, it is great that we literally pressured the government into having a provincial ministerial order that is only one step down. And it is going to take a while for it to cascade down to each and every school, each and every classroom to protect all of our kids, we HAVE it in hand. And it is so empowering to know you aren't an over-worried mom but rather you are right to demand the school's support for your child with a life-threatening health issue. (Where's the crazy in that??!)

Wow. Well, this is a bit of how I remember it -- some things might be mixed around! So you can also click on my name and see all the posts I have written and look through them to get to other parts of the conversation.

Good luck with your efforts Mamma2Rya. And always always remember you have a community of supporters here at AL. I get chills when I think of all that we were able to mobilize just through this network. I am ever so deeply grateful. Together we DID make a difference!!

Caroline

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PostPosted: Wed Nov 07, 2007 10:25 pm 
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Joined: Thu Aug 24, 2006 1:42 am
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Location: Victoria, British Columbia
OH!! And of course of course of course. . . Sara Shannon and Mike Shannon came when we rallied on the steps of the Legislature, which was captured in the documentary. Sara even got in where no one else could -- to meet with the Minister of Education -- and I truly think this was the tipping point that swung the government into action. Their brave act of sharing Sabrina's story help make this government action happen for us, and our gratitude is immeasurable. In fact, in my heart of hearts, I think of our BC government document as Sabrina's Order in her honour.
Caroline

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PostPosted: Thu Nov 08, 2007 12:30 pm 
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Joined: Mon Feb 07, 2005 6:39 pm
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Thanks Caroline - I think that kind of a recap is really useful for Mamma2rya or anyone looking to organize in there own area - in Canada or the U.S.

I think it's often just getting started that is the hardest. And you've shown, that that part isn't as tough as it might seem. Probably because parents of at-risk kids are quite motivated. Once you've got a few good people to work with, you can share ideas and things really get cooking.

You know watching you women in action, the most impressive part? Zero egos, even in the midst of tiredness and occasional anxiety over whether things were moving forward. You guys really kept your eyes on the bigger, more important picture of protecting at-risk kids.

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