Companies To Solicit

[Ccconfucius]

If you have any company in mind to ask for donation. This will be the place to put it.  Following nordnurse advise and continuing mellivora's idea on condom companies is good start. And i believe somebody suggested that gay groups might sympathize with us.
Just drop your company,group,foundations etc... ideas here.

[Ccconfucius]

I have come up with talk shows, from late night shows to morning shows to oprah/ellen degeneres type shows. The give money out alot.

[Daveman]

I have come up with talk shows, from late night shows to morning shows to oprah/ellen degeneres type shows. The give money out alot.

That's a good one, and if anyone's got enough guts to actually appear on the show, they might even pay for that. (toward donations). I think it's something that could interest them, mature audiences an all.

[Ccconfucius]

I have come up with talk shows, from late night shows to morning shows to oprah/ellen degeneres type shows. The give money out alot.

That's a good one, and if anyone's got enough guts to actually appear on the show, they might even pay for that. (toward donations). I think it's something that could interest them, mature audiences an all.

hopefully they dont ask to be on show, that will be a tough choice.

[Ccconfucius]

i got a response from one of the foundation i sent a letter. It wasnt what i hoped but at least i know letter been read.

[Observer]

I have come up with talk shows, from late night shows to morning shows to oprah/ellen degeneres type shows. The give money out alot.

That's a good one, and if anyone's got enough guts to actually appear on the show, they might even pay for that. (toward donations). I think it's something that could interest them, mature audiences an all.

hopefully they dont ask to be on show, that will be a tough choice.

Come on guys, i know that is a tough choice, but something like this on that kind of show could go viral and we need to expose our problem to the world. Imagine what sex is to every person, and the mere thinking of getting sick after having sex - and more in our current society where everything revolves around sex. It is like to give a slap to the mainstream thinking that "sex is good for everyone" and a lot of people could be attracted to this topic.
Moreover, i am sure - and that is the main reason why i did the interview- that there are a lot of POIS sufferers everywhere without even knowing that their condition has a name. But i understand if someone does not want to appear on TV: I couldnt even thinking about it many months ago before the discovery of niacin. The thought of giving an interview while in POIS is something that would scare off every one of us.

[Stef]

I have come up with talk shows, from late night shows to morning shows to oprah/ellen degeneres type shows. The give money out alot.

Hello Cc and Forum Members,

Ellen DeGeneres sounds like a really good possibility.

I don't remember if these have also been mentioned yet -- "The Doctors" and "Dr. Oz" TV shows. The Doctors did a very brief talk about POIS a few months ago -- did not do it justice -- but I bet they would if you (the "collective" you) could suggest a US specialist to weigh in on the discussion for their show. I'm referring here to a volunteer among you willing to go public -- there must be someone (like Observer and Animus) who is willing to take the plunge!
 
For companies to solicit in general, keep in mind men's cologne companies, men's clothing (i.e. Polo), and men's magazines.

And I want to suggest another avenue of potential fund raising -- Ebay.  Sell your stuff!!!  You'd be AMAZED what people will buy!!!

Also, I heard back from a group of rare disorder patients from NORD who raised their funds in one year (raised more than the minimum!).  This is significant in that their disorder (a very rare metabolic disorder) is extremely personal, terribly embarrassing, and completely life-altering (in a way similar to POIS).  While not of a sexual nature, from my perspective as a life-altering condition, their's is truly miserable -- maybe even more miserable than POIS!

(As an aside, NORD recommended them for the TLC Mystery Diagnosis program after obtaining permission from their group's President.  They were accepted and she did an outstanding job, telling a story of great emotional pain growing up with this condition, the ridicule, etc (there's no hiding this condition) -- and raised great awareness about it.  If she can go public -- a few of you can also!).

Remember -- You are all part of the human family!!!  Everyone has something!

Here's a copy and paste from their group President's email to me about how they raised their funds (they don't know about your POIS forums -- just know that there's a group with a highly personal medical condition (like their's) that could use some ideas for fund raising.  So, here's what they did. (And it worked -- big time! Keep in mind, their disorder affects both men and women -- several men got on the fund-raising bandwagon!):


"Regarding our fund raising efforts -- Yes it was very difficult for us to approach others and ask for donations.
Some of the things we did includes:

-Printing our our flyers and mailing them out to potential donors-we bought those names online; (I will ask her about purchasing this list and get back to you all.)
-We relied A LOT on families and close friends;
-We had yard sales;
-We challenged each other to see who within our Foundation could raise the most funds. (Their Foundation is a fledgling group, just recently had a very simple, low-cost website put together.  Since they're not an official non-profit yet, all checks were collected by them, made out to their NORD grant fund, and mailed to us by their members.  Like you, they are located within the US and overseas);
-Lastly many of us made sacrifices, and donated what ever we could on a monthly basis.- I myself  worked a second job and donated as much as I could to reach our goal.


Guys -- it can be done and you can do it.  You've just got to summon the strength!
This is how real rare disease funding starts -- from funds collected by affected people who band together and storm the funding gates!!!!

I will get back to you about that list of potential donors that they purchased.  I've heard this from other successful groups, FYI.

Just keep on going forward!!!

Stef

[Ccconfucius]

thanks.

[Stef]

Cc (and All!),

I've heard back from that the president of that group who raised their first grant funds this past year.

Just as a reminder, this group has a rare disorder of a very personal and emotionally embarrassing nature. There's is as life-altering as POIS -- perhaps even more so because theirs is very obvious to anyone around them. There is no way for them to cover up its side-effect (I wish I could tell you what their disorder is -- but don't feel it would be appropriate unless they asked me to tell you.They don't know  -- and have had the sensitivity to not even ask -- about your condition.  They just want to help another struggling group.)

The remaining question was about the purchasing of a list of potential donors to solicit funds.  Their president had mentioned having done this with success (and I KNOW that other groups have done this also!).
  Here's her reply about that --

"I do not recall the company that I bought the list from. I went online and checked for "people who donated to medical research"
There were a lot of companies offering lists of all kinds, and for various prices.  I also did some checking to make sure that the list was current.

I paid with my credit card and the list was then e-mailed to me.

You can buy as many names as you want. Like I said, I do not remember the company that I dealt with but I do remember that there were many companies offering lists.

I hope this helps the group you've referred to. Tell them it can be done -- tell them to go for it!! No rare disorder is as mortifying and painfully embarrassing as ours -- we can't cover it up as you know -- it follows us wherever we go. "

So there you have it! They did what they had to do -- putting one foot in front of the other.  No backyard barbecues!

Please band together and don't rely on only one or two people to shoulder the responsibility of this!  (I say this last sentence with all sincerity and respect -- no one said it would be easy.  But it's also not impossible!!!)

Stef

[Daveman]

Cc (and All!),

I've heard back from that the president of that group who raised their first grant funds this past year.

Just as a reminder, this group has a rare disorder of a very personal and emotionally embarrassing nature. There's is as life-altering as POIS -- perhaps even more so because theirs is very obvious to anyone around them. There is no way for them to cover up its side-effect (I wish I could tell you what their disorder is -- but don't feel it would be appropriate unless they asked me to tell you.They don't know  -- and have had the sensitivity to not even ask -- about your condition.  They just want to help another struggling group.)

The remaining question was about the purchasing of a list of potential donors to solicit funds.  Their president had mentioned having done this with success (and I KNOW that other groups have done this also!).
  Here's her reply about that --

"I do not recall the company that I bought the list from. I went online and checked for "people who donated to medical research"
There were a lot of companies offering lists of all kinds, and for various prices.  I also did some checking to make sure that the list was current.

I paid with my credit card and the list was then e-mailed to me.

You can buy as many names as you want. Like I said, I do not remember the company that I dealt with but I do remember that there were many companies offering lists.

I hope this helps the group you've referred to. Tell them it can be done -- tell them to go for it!! No rare disorder is as mortifying and painfully embarrassing as ours -- we can't cover it up as you know -- it follows us wherever we go. "

So there you have it! They did what they had to do -- putting one foot in front of the other.  No backyard barbecues!

Please band together and don't rely on only one or two people to shoulder the responsibility of this!  (I say this last sentence with all sincerity and respect -- no one said it would be easy.  But it's also not impossible!!!)

Stef

And I think imperative! Without this we will remain stagnant.

In one month if we don't make it, we will have to wait another year. Another year. And will we make it then?