Getting Outside Funding.

[Ccconfucius]

If we are successful with nord,  we should start a different pot for dr waldinger, so he can continue his research, i think his next step will be to examine semen more closely to find the culprit.
Is it  possible to start one now.

[mellivora]

I'll be brief as I have not much time:  I don't see us making the target this year UNLESS we get more people to donate who are NOT POIS sufferers, i.e. sympathizers.  The most amazing fund drives I've seen on the internet occur on the site reddit.com   A group (under the banner of atheists giving to charity) raised something like $200k in a day.  Big stuff happens when you crowdsource it.  If I were to head it up, I'd go along the lines that most reddit users are males who often celebrate the action of masturbation (search "fapping") or just sex in general.  If we could get some large-scale sympathy from that crowd, we could potentially see a lot of micro-donations.  Now they are a skeptical bunch, so any plea will have to be well written and backed up.

I have to go, I hope there is some discussion on this when I'm back!

I think Nightingale's post about raising money for the NORD fund through crowdsourcing could prove to be the most significant forum post for quite some time. If we act on it.

I've just been looking into reddit and twitter as possible means to fundraise. I can see how its possible to do this and its been done before.

Do any existing users of reddit/twitter have any thoughts?/tips?

[Nightingale]

One step would be to choose which subreddit to put our plea into.  Reddit is divided into thousands of subcategories, some of which are well suited for us.  The first to come to mind would be http://www.reddit.com/r/IAmA/ , or IAmA.   Stands for "I am a" and is mean to be the prefix to your post, so for example our post could be titled "IAmA man who is allergic to my own semen" or "IAmA man who orgasams, and then feels like I just jizzed my brains out for days (I have Post Orgasmic Illness Syndrome"

Note the ridiculousness of the second suggestion.  Take a look at the most "upvoted" or highest viewed posts, and they have very witty/provocative headings.  One problem with that subreddit is that it is in the singular "I" rather than the "we" that would suit a general plea on behalf of everyone.  But that's a relatively small thing.

There are more subreddits, probably one for charity, but these smaller subreddits don't go nearly as viral as the others.  Explore the site, lets get some ideas!

Oh and feel free to write some content for our reddit post and post it here, we are going to need to fine tune it

Here's one that got a ton of attention: "IAmA guy that hasn't pooped in the month of August yet. Ask me anything about my extreme constipation." http://www.reddit.com/r/IAmA/comments/jo5at/iama_guy_that_hasnt_pooped_in_the_month_of_august/

Also note his username: "nopooshallpass" ,  a reference to that scene in Lord of the Rings where Gandalf banishes the balrog.  This stuff helps.

[Ccconfucius]

very new to reddit, going to start exploring more. i think we should propose on nsf for the witty message and people who can go over to respond.

FANTASTIC IDEA.

[demografx]

EXCELLENT!

[demografx]

I was thinking about what the forum thread with the most views on the web is. I did a few brief google searches to see if there were any references to this. These searches weren't remotely thorough but I found a couple of discussions on the topic. None of the forum threads suggested had anything like the number of views that our thread on NSF has had (well over 1500000). This set me wondering whether it might be worth writing to Guiness World Records to see if they can determine if our thread has had the most views of any forum thread or indeed if its the longest forum thread in existence. Its something that might be tough to assess but what if we do actually hold such a world record?

If we did, this could be a way of gaining publicity. With a bit of encouragement, online news sites and newspapers might run a short piece on this. Of course any article should mention our efforts to raise funds for research into our condition.

However, I did find this on the Guiness World Records website: "We no longer accept any email or postal based records, such as chain letters or similar variations."
Its possible a forum thread would be viewed as such a "similar variation" so might not be considered for a record. Might give it a shot though!

Can anyone find a forum thread that's had as many views as our NS thread? or is as long?

mellivora, would you be up to taking a crack at submitting?
http://member.guinnessworldrecords.com/register/login.aspx

[mellivora]

mellivora, would you be up to taking a crack at submitting?

There's a number of poisy things I intend to do this week. Other things are about to get busy here but yep, its on the list for next few days!

[mellivora]

One step would be to choose which subreddit to put our plea into.  Reddit is divided into thousands of subcategories, some of which are well suited for us.  The first to come to mind would be http://www.reddit.com/r/IAmA/ , or IAmA.   Stands for "I am a" and is mean to be the prefix to your post, so for example our post could be titled "IAmA man who is allergic to my own semen" or "IAmA man who orgasams, and then feels like I just jizzed my brains out for days (I have Post Orgasmic Illness Syndrome"

Note the ridiculousness of the second suggestion.  Take a look at the most "upvoted" or highest viewed posts, and they have very witty/provocative headings.  One problem with that subreddit is that it is in the singular "I" rather than the "we" that would suit a general plea on behalf of everyone.  But that's a relatively small thing.

There are more subreddits, probably one for charity, but these smaller subreddits don't go nearly as viral as the others.  Explore the site, lets get some ideas!

Oh and feel free to write some content for our reddit post and post it here, we are going to need to fine tune it

Here's one that got a ton of attention: "IAmA guy that hasn't pooped in the month of August yet. Ask me anything about my extreme constipation." http://www.reddit.com/r/IAmA/comments/jo5at/iama_guy_that_hasnt_pooped_in_the_month_of_august/

Also note his username: "nopooshallpass" ,  a reference to that scene in Lord of the Rings where Gandalf banishes the balrog.  This stuff helps.

I've had look around and I think you hit the nail at the first attempt Nightingale. I think the 'Iama' subreddit is the most suitable. Its easy to find on the site and popular. I don't think its a problem that it's "I" and not "we", it'll likely make the post more personal. Individual cases are often used in charity campaigns because people can relate to an individual more than an illness.

I don't think we should spend too long getting this up and running. I'm having a think about it now. I'd be happy to take it on but the drawback of me doing it at the moment is that I'm scheduled to be away for 3 weeks of February and will likely have no internet access for nearly all that time. We need to be able to respond to people's posts and we only have 2 months before our deadline.

I'll have a think about the content of the post - we need to include donating of course! But I'll kick things off with a couple of suggestions and look forward to reading any others people have:

Username suggestions:

sosexyithurts
imtoosexyformybody


Headings:

iama guy who hasn't been able to ejaculate for 15 years without being sick for at least a week afterward

Iama guy who can't have sex or masturbate without being ill for at least a week afterward

iama man who hasn't ejaculated for 15 years without being ill afterward and I need your help

iama man who, like several hundred others in the world, can't ejaculate without being ill for at least a week afterward.

I am a guy who cant jizz without being sick

[Ccconfucius]

i think ur headings should be one of your username
sosexyithrts
imtoosexyformybody    
those will attract alot of people, i was laughing when i read them, that is one thing that  attracts on reddit.


username can be boring, but heading should be fun.

what should be style of response to negative response, we cant be defensive

[mellivora]

Thanks for the feedback CC

I agree the headings should have a good hook/bit of humour if we can word them right but I also think some intrigue based on fact goes a long way. As Nightingale said, I think a good catchy username can help with getting responses too even if its not the first thing you see. Its a second punchline.

Posts on the subreddit iama need to start I am a....
I do think some details of our case in the title could help. And there are several Iama's that have pretty "sensible" headings that have nonetheless had a lot of views because they give just enough specific info that you want to find out more.

Personally I think just putting: 'I am a man that is too sexy for his body' or 'I am a man that is so sexy it hurts' isn't quite enough. They might be a little intriguing but I think they only become funny when you already know the context. I might be wrong.

Perhaps a bit of both. Something along the lines of:

 I am a man who is so sexy it hurts. Ejaculation makes me sick
or
I am a man who is too sexy for his body. Ejaculation is killing me.

Perhaps the 2nd is going too far...! (or at least I hope its not literally true!)

Good to be getting some thoughts from on this....keep em coming!

[demografx]

mellivora, would you be up to taking a crack at submitting? [to Guinness World Records]

There's a number of poisy things I intend to do this week. Other things are about to get busy here but yep, its on the list for next few days!

mellivora, THANK YOU!!!!

[MrMoonJr]

I would Just Like to say I think the Reddit- IAmA is a great way to get attention. A lot of people use Reddit daily and some posts get tons of feedback.

As for some possible Username I like the idea of being Eye Catching.

"ImSoSexyItHurts" Is a really good one, it also adds humour which I like. Some other possibilities I thought of Are:

-SickAfterSex
-FluAfterFellatio
-SexMakesMeSick
-PornMakesMePuke

and Some Ideas for IamA
-IamAvictimOfPOIS
-IamAllergictoMyself
-IamAVitctimBySex
-IamAllergictoSex
-IamAVictimOfaRareDisease

Tell me what you think

[mellivora]

Hi MrMoonJr!
Thanks a lot for taking time to contribute your thoughts. FluAfterFellatio made me chuckle - that's good.

I like IamAllergictoSex. That might elicit a wtf reaction and get people reading. I guess the drawback is we don't know that's the case for sure and part of the purpose of the NORD grant is to get to the bottom of what is causing pois once and for all.

I think it could be a fun experience to be the POIS reddit guy and it might be quite liberating to talk to some randoms about our condition.

Hopefully we'll get some more suggestions and thoughts. If you think of anymore, you know where to write them! Thanks again!

[MrMoonJr]

Hey! Just a question, if people are going to donate, lets say friends or family, do they just go to the NORD website and go through the same process we would?

[Stef]

Hi MrMoon,

ANYONE can donate. He/she would use the same process that any of you would -- through the website.

Also, if someone would rather not use the website donation page -- for any reason -- a check sent by postal mail is fine (a check in American funds).  Many of our donations do come in by check.

Stefanie (aka "nordnurse")

Hey! Just a question, if people are going to donate, lets say friends or family, do they just go to the NORD website and go through the same process we would?

[demografx]

FluAfterFellatio?

LOL!!!!!

        

[Vincent M]

For usernames

"Allergic_To_My_Semen"
"Allergic_To_Orgasm"
"Allergic_To_Jizzing"
"Allergic_To_Dat_Ass"
"Sex_Denied"


man i feel goofy. We need to catch up on the latest internet memes involving sexual humor in particular.

Another thing to Keep in mind is everyone on these sites is extremely pro-masturbation and pro-porn so anything that makes us look like we are against porn or sex like "SexMakesMeSick" or anything along those lines wouldn't turn out well for us. There are a lot of people out there who seem to have Sexual Exhaustion if anyone remembers how we contacted their group before. These people go around the net saying that masturbation and porn cause bad health effects for everyone. Thus the majority of people on these sites respond with anger whenever someone appears to be one of these people. I know this because before I had POIS I thought for some time that masturbation must make everyone feel the way I did, because of some ancient Chinese philosophy type thing I read about how losing the semen causes weakness so I went around telling everyone how bad masturbation is and I was basically crucified each time.

Looking at the other suggestions...
FluAfterFellatio might work. PornMakesMePuke wouldn't be a good idea for the reason I mentioned above in my opinion. I feel like the "I'm too sexy" thing is too old school and we need something newer to target the new generation. That's another thing to think about though is who exactly is our audience? We want guys who have money to toss around so we need to think about what kind of things would attract that particular population. If we use a name that is too sexually "dirty" we might risk losing more conservative types and females. In that case something generic, but eye-catching like AllergicToSex or AllergicToOrgasm might be a good middle ground to take.

[mellivora]

Some good points re: sexual exhaustion, thanks Vincent Marcus. I agree when it comes to getting people to donate we don't want to be too light-hearted or sexually "dirty" as you put it. Its  a serious, life-wasting condition and we need to convey that. Plenty of posts on iama are pretty matter-of-fact but still get a lot of views. But a bit of humour/wittiness sprinkled on top to show we are human despite our condition and hook people in is probably good. Fewer people would want to engage/help someone who is negative all the time. I think just being matter-of-fact and open perhaps with a bit of banter where appropriate is more the way to go.

We need to get this on the road. Does anyone here want to put themselves forward to be our guy on reddit? As I mentioned, I'd be happy to but I'm going to be away for much of Feb with very limited internet access so I wouldn't be around to keep the thread going.

[Ccconfucius]

I think this is a good quote to use; Got it from poissufferer's post and tweaked it a littler i think we have alot of post that we use on reddit to use as topic title but we got to find.

I am guy who has lost 10 of my life, and I mean lost!".
- go on to describe how and why.
      - we can compile some of our stories here
                -  try to connect with people
      -  describe pois
- transition to how to donate money




I think we should do this quick before reddit gets desensitized to solicitations.  I can start an account but, i think there should be people who are not always fogged out like me to respond.

[Nightingale]

I think this is a good quote to use; Got it from poissufferer's post and tweaked it a littler i think we have alot of post that we use on reddit to use as topic title but we got to find.

I am guy who has lost 10 of my life, and I mean lost!".
- go on to describe how and why.
      - we can compile some of our stories here
                -  try to connect with people
      -  describe pois
- transition to how to donate money




I think we should do this quick before reddit gets desensitized to solicitations.  I can start an account but, i think there should be people who are not always fogged out like me to respond.

I think this is a good outline to work with.  I"l be thinking of what to add tomorrow...