Free Flow Discussion about POIS

[demografx]

Research is very expensive.

Yes it is. This is why we are very fortunate to initiate a  "seed grant" -- paid for by POIScenter members.

But this first grant will hopefully attract even MORE funding (next time not $$ from us, but from Government and Industry!), once we have our first POIS research done that is conducted with state of the art controls, systematic theoretical testing and experiments, and top scientific medical research investigators.

[Stef]

Hi Everyone!

Some of you may know that February 28th (one week from today) is global Rare Disease Day (RDD).

Rare Disease Day was started by NORD's sister organization in Europe -- EURORDIS -- in 2008.  That year, the last day of February occurred on the 29th -- a leap day (a rare day!! -- one that only occurs once every four years).

We have a close working-relationship with EURORDIS, and partner with them on many international projects. Our missions are exactly the same -- to help people with rare disorders.

In 2009, EURORDIS invited NORD to be the official sponsors of Rare Disease Day in the US. We took on the challenge (it is a challenge -- a huge undertaking!) and have been sponsoring Rare Disease Day in the US since 2009.

Rare Disease Day is a MAJOR awareness-raising event that takes place around the world.  Here are the websites for the EURORDIS and NORD RDD sites -- in case any of you are interested in finding out what's going on around the globe for this event:

EURORDIS -- www.rarediseaseday.org
NORD -- www.rarediseaseday.us

***EURORDIS recently made a RDD video that I thought you might like to see.  It's unique -- unusual -- not what I expected.  I think it's a terrific video, and is only ~ three minutes long.  I think it really captures the message that rare disorders cause the same difficulties, regardless of where on this earth one lives.

Here's the link to the EURORDIS video -- http://www.youtube.com/watch?v=n6HReXaUUSw&feature=youtu.be.

I hope that it touches you.

Stef

[mellivora]

Thanks Stef! The film has a nice message that people with rare diseases are people like anyone else - with feelings, ambitions, hopes and love like anyone else.

-------

In my first post on the Naked Scientists forum back in 22 August 2007, I wrote:

"I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that."

On 6th September 2007 I wrote:

"We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!) to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine  and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments."

It took more people and in many respects bigger people than me to make it happen and I'm grateful to every one of you. It seems we'll get our research grant this year

Let's not forget John21 who made the first post on the NS forum. That was 6 YEARS AND 3 DAYS AGO!!! 6 YEARS!!! I think its inevitable given the existence of the internet that we'd have found each other although I'm glad it wasn't any later than 6 years ago! Feel lucky that you live in a time when we've been able to find and communicate with each other. Things could be much more lonely without this amazing technology, as they actually were for some of us for so long in the days when POIS didn't even have a name and seemingly wasn't recognised by anyone except the isolated people that suffered its life-ruining symptoms in silence.

Thank goodness for the likes of Demo and B_Jim and later Daveman who kept the cogs turning for so long. We've meandered all over the place but like a river we've gathered volume and momentum and managed to flow in roughly one direction. Soon a whole sea of people will know about us and hopefully we'll wash up on paradise island, POIS-free.

We all have each other and ourselves to thank. Here's to us, to NORD and to medics who want to help us. We are no longer just treading water. In fact we might have just built ourselves a raft..

[demografx]

Here's to us, to NORD and to medics who want to help us.

As B_Jim writes: "not to be confused with orgasm"
(we don't want to be responsible for any POIS as a result of viewing this post ).

[Stef]

Thanks Stef! The film has a nice message that people with rare diseases are people like anyone else - with feelings, ambitions, hopes and love like anyone else.

-------

In my first post on the Naked Scientists forum back in 22 August 2007, I wrote:

"I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that."

On 6th September 2007 I wrote:

"We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!) to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine  and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments."

It took more people and in many respects bigger people than me to make it happen and I'm grateful to every one of you. It seems we'll get our research grant this year

Let's not forget John21 who made the first post on the NS forum. That was 6 YEARS AND 3 DAYS AGO!!! 6 YEARS!!! I think its inevitable given the existence of the internet that we'd have found each other although I'm glad it wasn't any later than 6 years ago! Feel lucky that you live in a time when we've been able to find and communicate with each other. Things could be much more lonely without this amazing technology, as they actually were for some of us for so long in the days when POIS didn't even have a name and seemingly wasn't recognised by anyone except the isolated people that suffered its life-ruining symptoms in silence.

Thank goodness for the likes of Demo and B_Jim and later Daveman who kept the cogs turning for so long. We've meandered all over the place but like a river we've gathered volume and momentum and managed to flow in roughly one direction. Soon a whole sea of people will know about us and hopefully we'll wash up on paradise island, POIS-free.

We all have each other and ourselves to thank. Here's to us, to NORD and to medics who want to help us. We are no longer just treading water. In fact we might have just built ourselves a raft..

Mel,

How beautifully you write!!!

In the US a popular slogan is, "It takes a village."  

In the world of POIS -- it took a forum of men -- who often could barely eke out a living due to the disability that POIS inflicts -- to trust the process and make donations when they were able.

From my outsider perspective, one of the most amazing things to observe was the support and encouragement here.  If you men only knew how truly AMAZING that is!!!!!!

I keep thinking of Demo -- how he struggled for probably more than 50 years before realizing why he was struggling so terribly -- that it was not a personal character defect!  I guess we'll never know how he made it through.  (Even Demo says he doesn't know how he did it!)  

And then he had the fortitude to tough it out -- brave the push-back -- and forge ahead.

You have all passed an incredible milestone -- and you will not be disappointed.  I am certain of this!!  

There is nothing except solid, scientific research into this miserable, rotten, son-of-a-gun condition.

And just think of the countless others whose lives you will have vastly improved -- or even saved!

Stef

[demografx]

Stef, I don't know how we can thank you enough!
Demo

[demografx]

Hi Everyone!

Some of you may know that February 28th (one week from today) is global Rare Disease Day (RDD).

Rare Disease Day was started by NORD's sister organization in Europe -- EURORDIS -- in 2008.  That year, the last day of February occurred on the 29th -- a leap day (a rare day!! -- one that only occurs once every four years).

We have a close working-relationship with EURORDIS, and partner with them on many international projects. Our missions are exactly the same -- to help people with rare disorders.

In 2009, EURORDIS invited NORD to be the official sponsors of Rare Disease Day in the US. We took on the challenge (it is a challenge -- a huge undertaking!) and have been sponsoring Rare Disease Day in the US since 2009.

Rare Disease Day is a MAJOR awareness-raising event that takes place around the world.  Here are the websites for the EURORDIS and NORD RDD sites -- in case any of you are interested in finding out what's going on around the globe for this event:

EURORDIS -- www.rarediseaseday.org
NORD -- www.rarediseaseday.us

***EURORDIS recently made a RDD video that I thought you might like to see.  It's unique -- unusual -- not what I expected.  I think it's a terrific video, and is only ~ three minutes long.  I think it really captures the message that rare disorders cause the same difficulties, regardless of where on this earth one lives.

Here's the link to the EURORDIS video -- http://www.youtube.com/watch?v=n6HReXaUUSw&feature=youtu.be.

I hope that it touches you.

Stef

http://rarediseaseday.us/

[PBO]

Hi Everyone,

I can't stress this enough.  NORD's MAC will be your absolute best advocates.  Demo and daveman will compile a list of the most major symptoms and the remedies that have been helpful, from the data on this forum site. Our MAC will appreciate this input fully because there is really nothing in the scientific literature to adequately describe the numerous symptoms of post-orgasmic illness syndrome -- which -- based on some of your posts -- don't only occur post-orgasmically.

The study will be posted in mid-March 2013, then a very laborious and formalized process takes place over a nine-month period.  Our MAC will gradually weed out those applicants whose proposals don't have enough scientific merit or potential.  The award recipient will be determined by our MAC in mid-late November, 2013.  It's a long process -- but there is NO OTHER WAY TO DO IT.  

In the meantime -- here's some unsolicited advice which just occurred to me...

There have been a few times when there have been tied scores between the two best researchers for a particular study.  Our MAC will discuss these at length -- and often won't/can't budge on their individual scores, despite these open discussions. I've been in on every single teleconference for the past eight years -- and I know that they do this 100% seriously, with utmost dedication and ethically (and for free!).

So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it!  I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants!  So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half  of the the original amount.  They end up making up the difference from other resources within their institutions.  Our MAC checks everything, including what other resources may be available to the researcher and his team.

But if you men can't afford to kick in some extra money, it's OK!!!  It all works out, so I don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!

So -- that's my concise answer. :-)

Stef
 

Just to make sure I've understand it correctly, after mid-March (March 22nd) we won?t be able to give more money to our research grand although the research isn?t expected to start before mid-November?

I suppose the answer Is that we won?t (because the researcher has to know in advance the funds he/she is going to have available). But I just wanted to confirm it.

Thanks,
PBO.

[PBO]

PBO, I asked Stef, and she replied, "You can tell [PBO] that he's correct -- the grant will be offered at the amount that's in your fund at the time the RFP is announced. Stef"

Fully understood Demo.

Thanks for your reply,

PBO.

[LAPOISSE]

Its kinda quiet in here since we reach the goal ;

I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )

[demografx]

In February,  $2,542.90 was raised.
 
That gives us $33,677.00 since the balance of Feb 13 ($31,937.00) plus $1,240.00 (amijgoro) plus another $800.00 came in, to which Amij does not contribute.


For......... a grand total of....................... $33,677.00 + $800.00       =      $34,477.00 (we benefit by going over the $minimum)

[demografx]

Its kinda quiet in here since we reach the goal ;

I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )

 

[demografx]

I think we have made an incredible progress these last years: We are very near from our research objective, more and more people are joining our forum and discovering that they have POIS and that they are not alone, our experiences and the methods we tried are helping more and more people enormously, and we are even making amazing hypothesis about our problem that are sounding real and very possible. We are advancing so fast that I really believe that there is a shiny light at the end of the tunnel. Our problem will be solved very soon and this will happen because of us and our effort, and despite all the struggles we have to suffer. This is simply amazing.

Beautifully said, Observer!

[Observer]

Beautifully said, Observer!

As I said there are more and more reasons to be optimistic about the future. More research -> More publicity -> More people realizing they have POIS -> More research in the medical community, this can only get better

[demografx]

What's next for us?



Finally!

[demografx]

PBO, I asked Stef, and she replied, "You can tell [PBO] that he's correct -- the grant will be offered at the amount that's in your fund at the time the RFP is announced. Stef"

Fully understood Demo.

Thanks for your reply,

PBO.

You're correct, demo -- March 22nd is the cut-off date for all RFP donations for 2013.

NORD must have the full amount of a grant before we can post it as a RFP. We'll probably post the 2013 RFPs during the week of March 25th.  The latest they'd be posted is the first week in April -- and that would only happen because our IT staff is is a bit short-staffed right now (NORD's IT manager has been on sick leave because of his own rare disorder!).

If the group can raise a little more than the minimum  (which it already has done!) -- it's always for the best -- for the sake of the research. That money will all go to the researcher (aside from the NORD administrative fee of $3,500 -- which doesn't change, regardless of the amount of the grant). That administrative fee covers numerous expenses (mailings, countless long-distance phone calls and behind-the-scenes EXTRA HOURS of staff time) -- in truth, we often don't break even.  

(I just spoke by phone last week with a researcher in Italy  -- I had to call her to clarify something in her interim progress report -- an email would not have worked in this case. It took a few separate phone calls until I was able to finally reach her! That's just one example of one type of expense -- we don't have a special phone plan for long distance phone calls. )

The NORD program for research grants is absolutely not a profit-making program for NORD -- it never was, and probably never will be. It's purpose is to support scientific research for rare disorders, for which funding does not exist elsewhere. POIS fits that description more than any rare disorder that I'm aware of!!

As I've posted before on the forum, just getting to where the POIS forum's fund has gotten to at this point is TOTALLY AMAZING!!!

The forum members should know that based on the minimum amount of $33,500 -- 90 cents of every dollar will go directly to the research.

You men have done magnificently!!!!!

If you feel it would be helpful, please feel free to post this message on the forum, Demo.

Stef

[demografx]

THERE IS NOW OFFICIALLY $34,500.90 IN OUR NORD-POIS MEDICAL RESEARCH GRANT FUND!!

[fidalgo]

Demografx, now the donations is over? If I donate more money it won't go  to this survey? I'm asking that because I was donating monthly and, if we can't donate more, I have too cancelate my next donations...

[demografx]

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

[fidalgo]

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

Adn after that?