Author Topic: Free Flow Discussion about POIS  (Read 578501 times)

demografx

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Re: This may seem like a familiar place.
« Reply #765 on: February 21, 2013, 11:28:29 PM »
Stef, I don't know how we can thank you enough!
Demo
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #766 on: February 26, 2013, 12:01:47 AM »
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/
« Last Edit: February 26, 2013, 12:05:20 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

PBO

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Re: This may seem like a familiar place.
« Reply #767 on: February 27, 2013, 01:18:47 PM »

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.

« Last Edit: February 27, 2013, 10:02:32 PM by demografx »

PBO

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Re: This may seem like a familiar place.
« Reply #768 on: March 05, 2013, 04:41:25 AM »

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.

« Last Edit: March 05, 2013, 03:31:12 PM by demografx »

LAPOISSE

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Re: This may seem like a familiar place.
« Reply #769 on: March 05, 2013, 01:07:43 PM »
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

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Re: This may seem like a familiar place.
« Reply #770 on: March 05, 2013, 02:45:49 PM »


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)

« Last Edit: March 05, 2013, 09:55:58 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #771 on: March 05, 2013, 09:54:26 PM »
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 ; )

 ;D ;D ;D
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #772 on: March 05, 2013, 10:07:26 PM »

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! :)

« Last Edit: March 07, 2013, 01:43:16 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Observer

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Re: This may seem like a familiar place.
« Reply #773 on: March 08, 2013, 07:43:48 PM »

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
« Last Edit: March 08, 2013, 07:46:39 PM by Observer »

demografx

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Re: This may seem like a familiar place.
« Reply #774 on: March 11, 2013, 04:17:03 PM »
What's next for us?



Finally!

« Last Edit: March 11, 2013, 04:23:07 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #775 on: March 11, 2013, 05:52:32 PM »

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


« Last Edit: March 11, 2013, 06:05:14 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #776 on: March 15, 2013, 07:16:58 AM »



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



« Last Edit: March 16, 2013, 09:33:43 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

fidalgo

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Re: This may seem like a familiar place.
« Reply #777 on: March 15, 2013, 10:04:40 AM »
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

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Re: This may seem like a familiar place.
« Reply #778 on: March 15, 2013, 12:51:35 PM »
Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

fidalgo

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Re: This may seem like a familiar place.
« Reply #779 on: March 15, 2013, 01:14:24 PM »
Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

Adn after that?