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 Post subject: Canadian POFAK?
PostPosted: Fri Oct 20, 2006 1:39 pm 
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Joined: Thu Aug 24, 2006 1:42 am
Posts: 222
Location: Victoria, British Columbia
Hello there --

I have been struggling with how to connect with other parents in my community who have children with life-threatening allergies, and how we can advocate for allergies together...

This got me thinking about parent organizations like MADD -- Mothers Against Drunk Driving. The passion of these parents who suffered a loss of their child created such awareness about drinking and driving. People were so careless before -- "one for the road" and all that -- but now we all know CLEARLY that drinking and driving kills people, including innocent children. So I think that if, with the medical commuinity, we could add the parents' voice to the advocacy for allergy awareness, we could really make a difference all together. As parents, we can do a lot to protect our children if we can articulate why certain precautions have to be in place for schools and other public places. I know if we could approach people as a united group -- the lawmakers, the school administration and other parents without kids with allergies -- it might make more of an impact? And maybe less stressful to have to deal with all of these issues all alone?

Thoughts? Does this type of organization already exist in Canada? I know POFAK -- Parents of Food Alllergic Kids -- is an American organization. Does anyone belong to it? Do they have Canadian 'chapters'? If so, sign me up!

Caroline2

_________________
son anaphylactic to peanuts


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 Post subject:
PostPosted: Fri Oct 20, 2006 7:47 pm 
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Joined: Mon Jun 19, 2006 11:58 pm
Posts: 275
Location: on my pc in cp
wow that sounds really intersting... yeah and for MADD they have sooo many supporters many of whom have not felt the same loss, allergy awerness is a cause i would donate to if i knew how and where to to send some money

_________________
allergies - penicillin, benadryl, dust mites, enviornmental & chemical
conditions - dermatographism, eczema, well contorolled asthma
dietary - lactose intollerant, vegatarian


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 Post subject:
PostPosted: Fri Oct 20, 2006 8:48 pm 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
I don't know if anything Canadian exists, but if you start one Caroline2, I'll be your first official member :wink: . Great idea!!!

_________________
DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.


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 Post subject:
PostPosted: Sat Oct 21, 2006 2:11 am 
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Joined: Wed May 31, 2006 12:18 am
Posts: 45
Location: Edmonton
My parents would have killed to have something like POFAK when i was younger. . .come to think of it my parents would have killed for this forum, and this magazine when i was younger!

Caroline

_________________
Anaphylaxis to fish, nut, peanuts, soy, birch, and grass.
OAS


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 Post subject:
PostPosted: Sat Oct 21, 2006 12:22 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Hi Caroline2 -

Here are my thoughts:

1. I've been a member of POFAK - an online support group - for years, and it definitely saved my sanity awhile back. (These days I'm too busy with this forum to check in with them much, but I do think of them all as my "extended allergy family".)

It's because of POFAK that I felt I could become a support group leader and the moderator of this forum, so it's definitely been a key part of my own "allergy education" - and now I hope that the Allergic Living forum is doing the same for others.

See http://www.epi-man.com/journey.pdf for an article I wrote about my POFAK experiences for their SupportNet ezine.

2. The patient advocacy groups definitely already exist in Canada: Anaphylaxis Canada, the AAIA, and the AQAA. In the US, FAAN and perhaps the FAI would be the ones to look at.

At http://www.anaphylaxis.org/content/abou ... we_are.asp , Anaphylaxis Canada says:

Quote:
Anaphylaxis Canada's mission is to inform, support, educate, and advocate for the needs of individuals and families living with anaphylaxis and to conduct and support research related to anaphylaxis.


(They need to update their key goals - or at least the dates - but I think they're too busy making things happen with a shoestring staff to update their website!)

And on http://www.anaphylaxis.org/content/abou ... _we_do.asp they say:

Quote:
Anaphylaxis Canada is a non-profit organization created by and for people with anaphylaxis.

- We provide information and support to people with anaphylaxis, helping them to lead safe, normal lives.

- We work to improve safety standards for people with anaphylaxis. Canada is already one of the safest countries in the world for people with life-threatening allergies, and we've played a large role in making that happen.

- We work with the food industry to improve food labels, with school boards, restaurants, the airline industry, government and others. We provide consultation and help develop policies to keep people with anaphylaxis safe.

- We raise public awareness about anaphylaxis. There is still a great deal of misunderstanding about this condition.

- We conduct research and raise funds for research into anaphylaxis treatment and prevention.


Anaphylaxis Canada was created by the merger of two earlier patient advocacy organizations, one of which was started by Marilyn Allen, who lost her daughter Robyn to anaphylaxis in 1990, when Robyn (allergic to peanuts) was 15.

And of course AAIA and AQAA have similar origins (parents of FA kids) and missions. So the organizations are there - it's a matter of tapping into them, and working to communicate with them and through them. They are always interested in volunteers and people with good ideas and time and energy! :)

3. These patient groups are working hard to work together as well. Along with the CSACI (allergists' association) and CAAIF (allergists' research foundation) they authored the new Canadian anaphylaxis guidelines called Anaphylaxis in Schools & Other Settings - whose web version can be found at http://www.allergysafecommunities.ca .

And they are continuing to do work to improve the situation for those with life-threatening allergies across Canada.

4. At the local level, my advice would be to start a support group if there isn't one in your area. Anaphylaxis Canada provides support and materials for support groups (see http://www.anaphylaxis.org/content/prog ... upport.asp ).

Things work at different levels - and I have found that it's important to be involved at both the provincial and national level - even if it's just knowing what's going on - as well as the local level. Finding other parents in your area in a similar situation will most definitely give you a better feeling of community. But sometimes that's hard to find, and it can take time to build a group. In the meantime, you have to use the whatever community you can find - which would be this forum, in my opinion. :)

I know you want things to happen - and fast. :) Please keep in mind that things are happening, and that life for those with allergies is a lot better than it used to be. Thirty years ago food didn't have any labelling at all. Can you imagine?? When Marilyn Allen lost her daughter, they hadn't been told that peanuts could be fatal, nor that it would be a good idea not to have peanut butter in the house. They were just told not to let her eat it. No one mentioned epinephrine to them, and I'm pretty sure the EpiPen wasn't available. People who did get prescribed epi had to measure out the correct dose and inject it using a syringe. (Okay, now I sound like my dad talking about his school experiences when he was a boy!! Next I'll be calling you a "young whippersnapper". :lol:)

Now companies are starting to take notice of allergies in a big way, and schools and other communities are also starting to take notice. Clear-labeling legislation is (God willing) coming down the pipe in Canada and there is already legislation in the U.S. People in my support group are always comamenting now on how much easier it is to deal with peanut and nut allergies and to find safe products. (Dairy and egg and others are another story, but still...)

More and more doctors are starting to take life-threatening allergies seriously. We have new guidelines, as I mentioned, and food companies who are choosing to be corporate sponsors of Anaphylaxis Canada, for example.

Could things be be better? Definitely - and for those of us not living in Ontario (including myself) I know that the school situation is not always easy and that we would LOVE to have something like Sabrina's Law. (And even those living in Ontario face challenges at school still!)

But things are improving - and I suspect you will play a large role in your area to help things improve even further, with all your energy and ideas and desire for change. :)

I hope this helps, and doesn't sound too much like a lecture. I just thought it might help to have an idea of what is going on and what's gone on in the past. :)

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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 Post subject:
PostPosted: Sat Oct 21, 2006 3:58 pm 
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Joined: Thu Aug 24, 2006 1:42 am
Posts: 222
Location: Victoria, British Columbia
Oh, Karen, THANK YOU. I know there is no reason for me to remake the allergy awareness wheel, and I KNEW you would be able to help. :D

I know that there are medical organizations out there that have a lot of information. I also realise that many of the information networks and/or advocay groups started when parents needed to find a greater understanding for their children's allergies. I have used these organizations for information and support -- do they also have the 'teeth' to go in and push for changes in an unsafe situation? I have been needing those teeth our school -- to have a passionate and informed authority go in and say, "No -- you must do more to keep children with anaphylactic allergies safe. 'Just one' child is as important as all the others, and you need to understand that they cannot help having this health concern." I have been lost in a loop of bureaucratic policy makers that sometimes I think they forget we are trying to protect a child. Would these allergy organizations be able to advocate with me at this level? I really need that.

But I digress. When I speak with people who say that change is possible, they repeat that having a group of concerned citizens is going to make things easier -- we will get more attention and it will lighten the load of information gathering and stress management. I want to meet up with others in my area so we can do this as a group. This forum has been an awesome network, and I will contact those who registered on this site that say they live on Vancouver Island. Thank you for all your hard work to make this possible. I have, of course, also read through much of the information on the Anaphylaxis Canada website. I have now signed up to find out if there is a support group in my area -- and I let them know that I am willing to start one if there isn't.

I have been so happy to find this forum. Once I found out I that I was not alone in my struggles, everything felt more manageable. And to know that there are standards out there, and that I am not asking for too much to make sure my son is cared for at his public school -- that has been awesome. I may still be working hard, but I certainly feel less 'crazy' knowing that there are answers out there for those of us living with allergies.

THANK YOU!
Caroline2
ps So -- how did you find members for your group? I was thinking of asking my allergist if they would be able to 'spread the word' that there is family support. Also, I was going to work with my school district some more, as they have told me that they are going to improve the anaphylaxis policy in our area -- I want to find out if they can put something right in that policy that mentions local support groups are available for families living with allergies.


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 Post subject:
PostPosted: Sat Oct 21, 2006 4:50 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Hey dustytiger -

Quote:
allergy awerness is a cause i would donate to if i knew how and where to to send some money


You can donate to AC any time (and AAIA and AQAA) - go to http://www.anaphylaxis.ca/content/regis ... ation2.asp for more details.

:) K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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 Post subject:
PostPosted: Sat Oct 21, 2006 4:51 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Caroline2 - I will try to dig up an email I sent to someone about starting a support group - actually we should take that over to the Support Group area - I will start a thread there soonish. (Gotta go do yardwork now!)

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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 Post subject:
PostPosted: Sat Oct 21, 2006 9:17 pm 
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Joined: Mon Jun 19, 2006 11:58 pm
Posts: 275
Location: on my pc in cp
karen - thank you for the link i'll defiantly make a donation to that it's a VERY worth while cause

_________________
allergies - penicillin, benadryl, dust mites, enviornmental & chemical
conditions - dermatographism, eczema, well contorolled asthma
dietary - lactose intollerant, vegatarian


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 Post subject:
PostPosted: Sun Oct 22, 2006 3:29 pm 
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Joined: Thu Mar 03, 2005 9:38 pm
Posts: 1643
Location: Toronto
Hope this fits OK in this thread.

FAAN has a program called *Be A Pal* I think PAL stands for Protect an Allergic Life.

Is there anything similar to this in Canada? I'm thinking something that can be done by individuals or at the school.

_________________
self: allergy to sesame seeds and peanuts
3 sons each with at least one of the following allergies: peniciilin, sulfa-based antibiotic, latex, insect bites/stings


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 Post subject:
PostPosted: Sun Oct 22, 2006 5:49 pm 
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Site Admin

Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2947
Location: Toronto
Karen, Thanks a lot for posting such a comprehensive answer.

If you have a good outline about how to start a support group, I think that would be great to post, as there do seem to be some struggles with how to turn a number of interested parents into a motivated, meeting-holding support group.

thanks! /Gwen

_________________
Allergic to soy, peanut, shellfish, penicillin


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