The Indiegogo campaign

[Daveman]

Why was Indiegogo selected for the campaign? How about JustGiving.com or gofundme.com? They seem more popular. I think.

WOW, that's great, we can go to those next, or in parallel!

I'd like to see how much it takes to support this one, and then maybe we can think of winding up another one!!

[Daveman]

You may note that I moved a few of these posts. This thread is better for our internal discussions and the other one, "questions and answers" is made really for conversations with potential donors who want to know more about POIS.

Thanks!

[Daveman]

Guys, I've also got a twitter account started. Please go and follow indiegogo_POIS  or tweet to @IPOIS.

It was started in Spanish but everyone already invited are media people who read and write English too.

Feel free in English (or whatever language). POIS is international.

Ask people to retweet our Twitter posts.

There is at least one eccentric millionaire watching.

[Daveman]

One idea is to get a local/small newspaper, as a start, to write about us, while citing the campaign and the NORD research fund. Anyone know a reporter in their respective cities/hometowns? They won't put in our real names, of course.

HI Ali,

Follow me on twitter, indiegogo_POIS @IPOIS, perhaps link in some local media people. If you don't want to use your personal Twitter, make a new one. Follow your favorite locals and even send them tweets with our information. Anyone who follows me I will also follow so that we build a network!

Everyone link up to the local celebs.

[Daveman]

You can go to www.indiegogo.com/research-for-POIS . There is a tab for comments. Please, go and tell a little about your strife with POIS. A short note about what went wrong today or something. Ask them to lend a hand.

[Daveman]

Ya know? The more I see it the more I like it!!

www.indiegogo.com/research-for-POIS

[Prancer]

I agree! The indiegogo campaign is AMAZING and very beautiful! I am optimistic it will bring in lots of attention. Great job and thank you so much observer for starting that!

[Observer]

I agree! The indiegogo campaign is AMAZING and very beautiful! I am optimistic it will bring in lots of attention. Great job and thank you so much observer for starting that!! ME ENCANTA! 

Thank you very much for your support Prancer!! Gracias!

[Daveman]

I agree! The indiegogo campaign is AMAZING and very beautiful! I am optimistic it will bring in lots of attention. Great job and thank you so much observer for starting that!! ME ENCANTA! 

One of the best ways to give thanks (everybody) is to go over there, sign up and participate. We need to be seen and heard. If you don’t have money or even much time, it is very important that we contribute HERE!.

Everybody, don’t just sit back and watch and  hope that someone will donate. This requires participation.

Get involved in the twitter push too. Follow indiegogo_POIS and tweet to @IPOIS, retweet to people you know. If anonymity is aproblem, create a new user. Please, the effort is so little for what the returns could be. FEEL like you’ve been a part of it!

Thanks,
Getting off the soapbox (for now).

[Stef]

Hi All,

I'm getting on to the soap box that Daveman just got off.

Start tweeting!!! Follow Daveman at @pois_indigogo, or Observer at @Observercenter.  And post a comment at http://www.indiegogo.com/research-for-POIS?a=368571.

Beg, cry out -- tell the world!!!  You can do it anonymously. This is NOT the time to be shy and quiet.  All you need is for a few sympathetic people who are generous -- then watch what happens.

But it won't happen if only four or five of you (including me) are making an effort. 

SHARE THE WHOLE MISERABLE STORY -- you owe it to yourselves.

(FYI, I'm @ridgefieldmom18 on twitter-- used that name because there are a few celebrities, and some VERY wealthy people in my home town.)

I've already tweeted Donald Trump, Oprah Winfrey, and Hugh Laurie (Dr. House)!! 

Remember -- these people have thousands of followers who see the tweets --  spread the word.

You've all got to just rally yourselves.

WWE -- that's my next tweet.

How about tweeting Hugh Heffner (Playboy) and Bob Guccione (Penthouse)?

GO FOR IT!!!!!

Stef :-)

[Habibou]

I created my twitter account Habibou92 and tried to follow as much POIS members as possible.
I will try to follow french football player because they use to be associated to medical unknown case... so I think it could be a good idea  

[Daveman]

Good Idea.

Also everybody go to the indiegogo site and comment about POIS(using the comment tab), how it feels, how it messes up your life.

The more activity, the more possibility that we get raised to a higher position and shown to more people on indiegogo.

[Habibou]

This is what I did but we were only 5 .. 

[Daveman]

Well, there were 2 more, but I had to erase them SPAM.

The SPAMMERS are more interested than us it seems.

[Ccconfucius]

I just googled celebrities with rare diseases i found some with rare diseases and those who have kids with rare diseases we should follow some of them/tweet them.

Did you make your bio pois centered and what did you tweet. When you tweeted were you direct to the punch.

Common every body this is F'ing easy and it is a no hassle way to connect with celebrities and lots of people.

It is better than trying get oprahs attention through her website, like i wa

[Ccconfucius]

I think someone suggested this but  we can make fake facebook and send mails to all our friends who dont have private setting.

[Stef]

I think someone suggested this but  we can make fake facebook and send mails to all our friends who dont have private setting.

I've made a FaceBook event page for the indiegogo campaign, CertainlyPOIS, using my name as the host.  If anyone here has a FB page, all you have to do is "like" the event, then you can send "invitations" to any or all of your FB "friends."

Once you "like" the event, it will say "SHARE WITH CONTACTS."  You then have the option to share it and send it with a message to your FB "friends" -- saying something like, "These men are my friends.  Please read." That's what I did.

Or, you could write, "Sent to me by a friend. Please read.  What a horrible condition!"

http://www.facebook.com/events/337816662973743/

Stef

[Nightingale]

Hi Stef, I'm not getting to the page clicking on your link, and i cant find it by search. ?

I want to reach out to the important news people in the US regarding our campaign.  I have seen people like Tom Brokaw do special investigations into weird/rare illnesses simply after receiving an email from someone asking for help.  There are investigative programs on all the major networks, CBS, NBC, ABC and others.  I will try to collect my thoughts and submit a request for an investigation.  With a story like ours, they're guaranteed ratings... lol

[Daveman]

Hi Stef, I'm not getting to the page clicking on your link, and i cant find it by search. ?

I want to reach out to the important news people in the US regarding our campaign.  I have seen people like Tom Brokaw do special investigations into weird/rare illnesses simply after receiving an email from someone asking for help.  There are investigative programs on all the major networks, CBS, NBC, ABC and others.  I will try to collect my thoughts and submit a request for an investigation.  With a story like ours, they're guaranteed ratings... lol

Use the link www.indiegogo.com/research-for-POIS

We're on the Wall Street Journal at http://www.marketwatch.com/story/poiscentercom-announces-fundraising-effort-to-combat-rare-severely-debilitating-sexual-disorder-2012-08-20 as well

[Stef]

Hi Stef, I'm not getting to the page clicking on your link, and i cant find it by search. ?

I want to reach out to the important news people in the US regarding our campaign.  I have seen people like Tom Brokaw do special investigations into weird/rare illnesses simply after receiving an email from someone asking for help.  There are investigative programs on all the major networks, CBS, NBC, ABC and others.  I will try to collect my thoughts and submit a request for an investigation.  With a story like ours, they're guaranteed ratings... lol

Hi Nightingale!

You're absolutely correct -- investigative TV programs (Dateline, 20/20, etc) would LOVE to do a story on POIS -- they just need to LEARN about it.  And it would definitely boost their ratings!!!!! (I remember watching an outstanding  piece on 20/20 a few years ago about Persistent Sexual Arousal Syndrome in women -- it was done with great sensitivity.)

For the FaceBook event page, you need your own FaceBook page.  If you have one, type in at the top search section, Indiegogo POIS Research Fund Campaign. That will bring you to the right place.

But there's SOMETHING MAJOR HAPPENING NOW!!

Daveman and demografx have set in motion a major publicity campaign through...ugh -- I can't steal their thunder!!  Go to "This may seem like a familiar place."  Demo has already posted something, and I think Daveman has also.

Stef