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Subject: "TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA"     Previous Topic | Next Topic
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sweetnfeisty
Member since Feb-23-07
268 posts
Feb-24-07, 07:40 PM (CST)
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"TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA"
 
   Hi all,

I hope I can find some helpers from across North America to help form a committee with me. This is an optimistic venture, but I'm up for the challenge!

If you share my goal and want to go in this direction, then please join the campaign. Any suggestions of any sort are very very welcome. This is a team effort. I can't do it alone.

BY ALL ACCOUNTS the Herpes virus is being passed on almost always by those who DO NOT KNOW THEY HAVE IT!!! And there is a very good reason they do not know they have it...besides the mistaken mild symptoms!

As is so often the case, a person might think that maybe they have something, not sure what it is, and then think OMG maybe its Horrible Herpes! So they don't go to the doctor or get tested out of FEAR!

(And as an aside - let me add that when someone accuses someone of passing on something they probably didn't even know they had at all, and calls them a liar, I am not sure that it helps matters?) Thats what I did 15 years ago. Today, with new info about asymtomatic carriers being the vast majority, I am sure eating my words!!!

It is us who can alleviate that fear and anxiety that surrounds the herpes myth, so that perhaps more and more people will stop being afraid of a herpes diagnosis. In my view this is the best way to combat the spread because we few who know we have it are just a teeny weeny minority - only about 2.5%! (10% of the 25% who have GH) and because of course many OH folks don't know the facts yet.

There is simply no funding for mandatory testing, so if we want as many of the 80% who have this virus to get tested so that they can be more careful, then we need to make them feel safe! They are all in denial that they could have Herpes. And ofcourse they are. I would be too!!! Its human nature. "It would never happen to me" But really, the biggest fear is fear itself, and thats what they need to be hearing from us. If anyone has any other ideas about how to get the other 75-80% of the North American population to step up and feel OK about herpes, then please, I want to hear it. I'm all ears. (And please, I am talking about realistic, attainable goals here).

So - here I am trying to organise an awareness run/walk/blood testing drive in all the major cities. But I can tell you that it won't be about disclosing anger, and victimization and blame and telling people how tough herpes is. It will be POSITIVE!! It will be about making people realise that they ALSO have it. That they are just like one of us. That we are normal people...LOL! And if they don't have it then they are actually the minority.

Maybe then, eventually, when the overwhelmingly vast majority of people realise that perhaps they do have it, and perhaps they do need to readjust their attitude, because hey, they are the same person they were the day before, not some 3 headed monster! Then, and only then, do I think we have a shot at making some real inroads in public awareness, which is the first step to a more responsible society.

I have no interest in being a martyr just because I am one of the very very few who has been diagnosed with symptomatic Herpes. I think we all have a right to want EVERYONE to take rightful ownership of this. Its not just about wanting others to PAY - its about once and for all putting this virus in its correct perspective. We are the sacrificial lambs (in fact ASHA told me they tell cold sore patients they do not have to disclose)! And yet we are the ones left to deal with "stopping the spread". Well...NO MORE!

I am willing to actually get out there and say and do something about it. I am waiting for everyone to join me - a few have and thank you for that - albeit it anonymously (which I understand completely but it saddens me so much).

Waiting around for someone else like govt or schools or health boards to do something really major is pointless. They have moved funding and the majority of their efforts on to diseases that are far more dangerous (and quite rightly so - people are dying of lots of other ilnesses folks)! We're not!

But it sure is easy to tell us to stop the spread when those that are spreadng it most are in the dark and in denial. Lets shed some light on the subject!!!!!!!!!!!!!!!!!Let's talk about it!

The biggest fear is fear itself!! If we believe it, then maybe they will too. As far as this virus goes, physically, that really is the case for most. (And I can say that even though I had a bad case of it!!)

I may take a moderate approach when it comes to blame. I prefer not to go there. I prefer to try and think that maybe, just maybe, if societies attitude was different, then this wouldn't have happened to me...and not blame an individual. This virus affects all of us - the whole population - in a very negative way, and I do try and remain cognisant of that. Always!

Maybe some of you think compassion and a more moderate approach is wrong, maybe some of you who are having a really tough time physically think I am undermining the effects of this virus - but you know - if that is what its gonna take to get the job done, and make people feel OK to stand in solidarity with us and take their place among us, get educated with us...THEN I DO NOT CARE!!! Its for the greater good of you, me, and society.

I for one am taking the approach that herpes as a VERY MANAGEABLE VIRUS. Because it is!!! (And that is the medical approach, as well as ASHA's).

We do still need to act responsibly, disclose to our partners, get tested, and get educated. BUT WE NEED TO KEEP SOME PERSPECTIVE TOO!

WHO WANTS TO JOIN THE AWARENESS BRIGADE AND HELP ME? ITS GONNA BE WILD!

LOL LOL LOL!!


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  Subject     Author     Message Date     ID  
  Are you **aware** of the tee-shirts? Rajahadmin Feb-24-07 1
     RE: Are you **aware** of the tee-shirts? C16679admin Feb-24-07 2
     RE: Are you **aware** of the tee-shirts? sweetnfeisty Feb-25-07 3
  RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA blue Feb-25-07 4
     RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA sweetnfeisty Feb-25-07 5
         Contacting registered members.. Rajahadmin Feb-25-07 6
             RE: Contacting registered members.. blue Feb-26-07 7
  RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA Amanda Apr-02-08 8
     RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA silver lining Jun-30-08 9
         Given that a year and a half have passed... Rajahadmin Jun-30-08 10
             You know, I would really like to do this, in LA. silver lining Jul-03-08 11
  RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA 383chick May-07-12 12
  RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA 383chick May-07-12 13

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Rajahadmin
Charter Member
15328 posts
Feb-24-07, 08:57 PM (CST)
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1. "Are you **aware** of the tee-shirts?"
In response to message #0
 
http://www.wearobgear.com/pages/raccoon.html One of our regulars is behind them.

"Do the Right Thing. It will gratify some people and astound the rest." - Paraphrased from Mark Twain


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C16679admin
Member since Aug-29-06
9733 posts
Feb-24-07, 09:13 PM (CST)
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2. "RE: Are you **aware** of the tee-shirts?"
In response to message #1
 
   Did you see the Special Notice post a few down from yours by Yoshi2Me? That sounds like a non-anonymous way to help advocate, potentially. Maybe you would be interested in that...

C.


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sweetnfeisty
Guest
Feb-25-07, 02:30 AM (CST)
 
3. "RE: Are you **aware** of the tee-shirts?"
In response to message #1
 
   Yes thanks - I actually ordered one the other day!!


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blue
Member since Feb-12-07
1279 posts
Feb-25-07, 12:53 PM (CST)
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4. "RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA"
In response to message #0
 
I am interested!!! Keep me informed as to what I can do to help


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sweetnfeisty
Member since Feb-23-07
268 posts
Feb-25-07, 06:56 PM (CST)
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5. "RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA"
In response to message #4
 
   Hi Blue,
Thanks for stepping up to the plate!
Where are you located and what is the best way to contact you?
SnF


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Rajahadmin
Charter Member
15328 posts
Feb-25-07, 09:29 PM (CST)
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6. "Contacting registered members.."
In response to message #5
 
Is very easy (if they registered with a valid email address.) You can click on the little icon that looks like an envelope and you will get a form that will send them an email through the forum.. OR The next icon to the right is for sending them a Private message through the board. They'll get an email notifying them that they have a PM, but won't give your email address away.

Let me know if I can help further.

"Do the Right Thing. It will gratify some people and astound the rest." - Paraphrased from Mark Twain


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blue
Member since Feb-12-07
1279 posts
Feb-26-07, 08:14 AM (CST)
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7. "RE: Contacting registered members.."
In response to message #6
 
Terrific. Let me know if you send a message, and I do not reply!


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Amanda
Charter Member
722 posts
Apr-02-08, 10:27 AM (CST)
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8. "RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA"
In response to message #0
 
   We used to talk about doing a walk when I used to run the NYC support group. We would come up with funny ideas, like calling it "the million herp march". Someone said that most people would be too embarrassed to walk in it unless they had bags over their heads, so we were going to design special paper bags with eyeholes, etc.

All kidding aside, it's still a good idea to do a walk/march. Keep us posted.

"Pray for the dead and fight like hell for the living."
-Mary Harris "Mother" Jones


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silver lining
Member since Aug-19-08
927 posts
Jun-30-08, 03:12 AM (CST)
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9. "RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA"
In response to message #8
 
   is anything happening with this?

http://loveinthetimeofherpes.blogspot.com/


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Rajahadmin
Charter Member
15328 posts
Jun-30-08, 10:59 AM (CST)
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10. "Given that a year and a half have passed..."
In response to message #9
 
since SNF's original post, I'm guessing that nothing happened or we would have heard about it. Seems like a great idea, but people are too fearful of somehow being associated with <whisper> herpes </whisper>.

"Do the Right Thing. It will gratify some people and astound the rest." - Paraphrased from Mark Twain


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silver lining
Member since Aug-19-08
927 posts
Jul-03-08, 03:54 PM (CST)
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11. "You know, I would really like to do this, in LA."
In response to message #10
 
   Our line can be that the march is for those of us who are, or have loved ones who are affected by GHSV. that way not everyone marching will be assumed to have it, if they are not comfortable with that.
this could be a great way to get the info the world needs to know about herpes out into the media instead of crap sensationalistic stories.
The first ever GHSV awareness march!
20% of people have it, only 2% of them know it, it's not the end of the world and there are great ways to prevent spreading it whether you have symptoms or not, so GET TESTED! we can coach everyone on good sound bites for the media.
But it will look lame and pathetic if there are only 12 people. We need to get at least a hundred.
In the LA area, since at least 10 million people live here, there are around 2 million of those who have it.
So getting 100 to march shouldn't be impossible.
We can make this the next stigma to break, like so many others stigmas and prejudices have been broken in the past. sometimes all it takes is that first move...

http://loveinthetimeofherpes.blogspot.com/


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383chick
Member since May-6-12
9 posts
May-07-12, 08:55 AM (CST)
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12. "RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA"
In response to message #0
 
   is it moving anywhere? i have experience in participating in non profit organization which was educating people about stds and hiv, spreading the word, i can share all the ideas they were using, they would get sponsors, they made playing cards with std facts, everything in joking manner, so the people wouldnt get boured, everything we did was based on fun, andeasy going manner, we did little campains in the public places where we would do kinda test of people knoweledge about stds and condoms, if a person doesnt guess we would correct them so they gonna know the right info..if he guess we would give him that funny cards with a funny pic on one side and a joke, and std fact on the other side..then we would ecourage the same people to participate in more q and a, so he could win a ticket to a club party or smth like it, we gave condoms as presents as well, cuz one of our sponsors was condom companie, well im ready to help in any way, let me know how i can..


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383chick
Member since May-6-12
9 posts
May-07-12, 08:57 AM (CST)
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13. "RE: TRYING TO ORGANISE A WALK/RUN FOR AWARENESS!! USA & CANADA"
In response to message #0
 
   ENESS!! USA & CANADA" In response to message #0

is it moving anywhere? i have experience in participating in non profit organization which was educating people about stds and hiv, spreading the word, i can share all the ideas they were using, they would get sponsors, they made playing cards with std facts, everything in joking manner, so the people wouldnt get boured, everything we did was based on fun, andeasy going manner, we did little campains in the public places where we would do kinda test of people knoweledge about stds and condoms, if a person doesnt guess we would correct them so they gonna know the right info..if he guess we would give him that funny cards with a funny pic on one side and a joke, and std fact on the other side..then we would ecourage the same people to participate in more q and a, so he could win a ticket to a club party or smth like it, we gave condoms as presents as well, cuz one of our sponsors was condom companie, well im ready to help in any way, let me know how i can..

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