Author Topic: Our New RFP ( Request For Proposal) for the new study is out !  (Read 91576 times)

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #40 on: April 08, 2018, 10:43:45 AM »

...RFP means that NORD is looking for a research team of a doctor to research about POIS using the $31,000 the members have donated. Is that correct?


Yes!
« Last Edit: April 08, 2018, 01:41:35 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: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #41 on: April 08, 2018, 10:45:54 AM »

I already prepared an email to a lot of doctors in my

country based on my thoughts above. Am I making

sense?


Yes!

Thank you very much, Meshal!!
« Last Edit: April 08, 2018, 10:48:37 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

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #42 on: April 08, 2018, 10:52:18 AM »

...members here have donated $31,000, btw huge appreciation for you guys...I can't express my gratitude.


Thank you, Meshal, I feel the exactly same way! Huge appreciation for all you POISCenter Forum contributors! (Including me :) )
« Last Edit: April 08, 2018, 01:14:41 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: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #43 on: April 08, 2018, 01:16:58 PM »


I already prepared an email to a lot of doctors in my

country based on my thoughts above. Am I making

sense?


Yes!

Thank you very much, Meshal!!
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: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #44 on: April 08, 2018, 01:17:56 PM »



Observer made an excellent suggestion:

Dr Goldmeier in London.

I think 1-2 forum members here visited him in London.

To all: feel free to use this email as a “template” to send to your own doctor or researcher

Subject: $31,000 Grant to study POIS

On Feb 28, 2018, at 6:41 PM, demo wrote:

Dear Dr Goldmeier,

I hope you’re well. I have been moderating POIS forums for 10 years.

You and I chatted briefly via email, then I think one or two of our members visited with you at your office.

Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can review and/or pass along to your colleagues.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Best wishes,

Demografx
Administrator
POISCenter.com

ps - please visit our forum!

http://www.poiscenter.com/forums/index.php
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

Habibou

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #45 on: April 16, 2018, 03:44:13 PM »
Hi, I have an appointment with De Goldmeier the 26th of April so I could let you know what's going on with his thoughts
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Quantum

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #46 on: April 16, 2018, 05:01:02 PM »
Thanks Habibou,  looking forward to hear from you :)
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #47 on: April 19, 2018, 06:07:10 AM »
Following is a private message posted here with fernab’s permission.


I am searching a good Dr in my country. But not very Lucky for the moment. Saw there is a RFP doc. If I finally find one Who is good enough and interested in investigating. Will let you know.


Hi, fernab!

Thank you for your interest in helping to distribute our RFP!

Best regards,
Demo

cc: POISCenter Admin Team

UPDATE: Forum Member fernab emailed our RFP to an immunologist who showed interest!


Any forum member can send this RFP out to researchers:
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx


« Last Edit: April 19, 2018, 11:17:49 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

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #48 on: April 24, 2018, 10:59:28 AM »

Today  NORD will be sending out another reminder about their current grant opportunities. They will be suggesting that interested researchers submit their application materials to NORD by May 7 in order to ensure that they are considered for the funding.  After May 7, NORD will evaluate the RFP response to determine if the call should remain open.

Priority will be given to proposals submitted by May 7
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

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #49 on: April 24, 2018, 12:22:55 PM »
I visited today an important urologist in my country. And also told him about the NORD RFP. He told me he knows NORD. But unfortunatelly, he also told me he is very occupied to do anything right now. He also knows a few things about POIS. He told me to try a drug to force retrograd ejaculations. That means, seminal liquid don't gets out directlly through the urethra but internally through the bladder. He wants me to test if this way I don't develop the POIS symtoms.

Quantum

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #50 on: April 24, 2018, 01:06:25 PM »
I visited today an important urologist in my country. And also told him about the NORD RFP. He told me he knows NORD. But unfortunatelly, he also told me he is very occupied to do anything right now. He also knows a few things about POIS. He told me to try a drug to force retrograd ejaculations. That means, seminal liquid don't gets out directlly through the urethra but internally through the bladder. He wants me to test if this way I don't develop the POIS symtoms.

Hi Fernhab.  He must have prescribed you an alpha-1 blocker such as Flomas/tamsulosin.  I would be interested to know what results you get with this, if you try it.
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #51 on: April 24, 2018, 03:02:53 PM »
Hi Quantum,

I think you are right. It's a alfa-1A blocker called silodosine. Alfa-1A adrenergic Receptors blocker. According to the drug description. Tomorrow will talk about it to my family doctor.

Will let you know if I finally try It.


demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #52 on: April 26, 2018, 11:35:03 AM »

Today  NORD will be sending out another reminder about their current grant opportunities. They will be suggesting that interested researchers submit their application materials to NORD by May 7 in order to ensure that they are considered for the funding.  After May 7, NORD will evaluate the RFP response to determine if the call should remain open.

Priority will be given to proposals submitted by May 7

Here is the link to NORD’s email about the reminder:
https://conta.cc/2K7jLlr
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

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #53 on: April 26, 2018, 11:50:19 AM »
Hi demo,

When you say ' After May 7, NORD will evaluate the RFP response to determine if the call should remain open.  '

Means there is still no proposal? Has not yet any arrived?? Do you have any info about that?

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #54 on: April 26, 2018, 02:50:54 PM »
Hi demo,

When you say ' After May 7, NORD will evaluate the RFP response to determine if the call should remain open.  '

Means there is still no proposal? Has not yet any arrived?? Do you have any info about that?

No proposals yet :(
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

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #55 on: April 26, 2018, 04:08:48 PM »
I told my inmunologist that may 7 could be a deadline date for applying for this fund.

He told me he would also tell to a good friend he has in an important hospital in NY.

Thinking a little about this, what should be necessary to make It interesting for a researcher?

It's a question of the number of people suffering this awful sindrom. It is not a big enough number?

If it was because of that. Can we do something to help this number becomes higher? If doctors knew better this illness maybe the number of people would be higher? If we think about it. Maybe yes.

Just because doctors would be able to detect more sufferers than they are able to detect right now. How many sufferers could be out there suffering POIS without knowing it? Doctors play an important role to make this number bigger.

And for this reason I try to spread the word about POIS to every doctor I visit. And letting him know about the NORD RFP as well.

I think we all can do something to change a bit this situation. It is somehow also our responsability.

What do you think about this?

certainlypois2

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #56 on: April 26, 2018, 04:27:03 PM »
would it be okay to just send messages to random local doctor.

mike_sweden

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #57 on: April 27, 2018, 12:58:26 AM »
where is the updated document?

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #58 on: April 27, 2018, 02:37:09 AM »
Just a little above un this thread we have this:

To all: feel free to use this email as a “template” to send to your own doctor or researcher

Subject: $31,000 Grant to study POIS

On Feb 28, 2018, at 6:41 PM, demo wrote:

Dear Dr Goldmeier,

I hope you’re well. I have been moderating POIS forums for 10 years.

You and I chatted briefly via email, then I think one or two of our members visited with you at your office.

Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can review and/or pass along to your colleagues.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Best wishes,

Demografx
Administrator
POISCenter.com

ps - please visit our forum!

http://www.poiscenter.com/forums/index.php

fernab

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #59 on: April 27, 2018, 02:45:04 AM »
would it be okay to just send messages to random local doctor.

Of course this is something we can do.
But, if you visit a doctor you can also take advantage and comment on it. Maybe the message is somehow stronger if he sees a real sufferer. But if course, everyone is completelly free of doing the way he feels better.