Author Topic: Tally of NORD Donations  (Read 83433 times)

Nightingale

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Re: Tally of NORD Donations
« Reply #40 on: January 20, 2012, 01:32:50 PM »
I'll be brief as I have not much time:  I don't see us making the target this year UNLESS we get more people to donate who are NOT POIS sufferers, i.e. sympathizers.  The most amazing fund drives I've seen on the internet occur on the site reddit.com   A group (under the banner of atheists giving to charity) raised something like $200k in a day.  Big stuff happens when you crowdsource it.  If I were to head it up, I'd go along the lines that most reddit users are males who often celebrate the action of masturbation (search "fapping") or just sex in general.  If we could get some large-scale sympathy from that crowd, we could potentially see a lot of micro-donations.  Now they are a skeptical bunch, so any plea will have to be well written and backed up.

I have to go, I hope there is some discussion on this when I'm back!
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

mellivora

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Re: Tally of NORD Donations
« Reply #41 on: January 20, 2012, 01:41:25 PM »
I'll be brief as I have not much time:  I don't see us making the target this year UNLESS we get more people to donate who are NOT POIS sufferers, i.e. sympathizers.  The most amazing fund drives I've seen on the internet occur on the site reddit.com   A group (under the banner of atheists giving to charity) raised something like $200k in a day.  Big stuff happens when you crowdsource it.  If I were to head it up, I'd go along the lines that most reddit users are males who often celebrate the action of masturbation (search "fapping") or just sex in general.  If we could get some large-scale sympathy from that crowd, we could potentially see a lot of micro-donations.  Now they are a skeptical bunch, so any plea will have to be well written and backed up.

I have to go, I hope there is some discussion on this when I'm back!

Thanks for the suggestion Nightingale. This is exactly the sort of post I was hoping to read! I'm going to be spending more time over the next week, whenever I can, trying to raise outside funds. I'll have a look at reddit. Please people, if we put our heads together and seriously start working on outside funding through suggestions like Nightingale's we can do this. Even within 2 months. Please post your ideas here. If you can act on them, even better! Thanks
« Last Edit: January 20, 2012, 01:45:02 PM by mellivora »

mellivora

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Re: Tally of NORD Donations
« Reply #42 on: January 20, 2012, 03:39:48 PM »
Did this:
http://www.google.co.uk/search?q=crowd+source+donations+for+fundraisers&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

Finding things like this:
http://www.crowdrise.com/

http://www.reuters.com/article/2011/12/12/us-atheists-donations-idUSTRE7B81SU20111212

I realise Friday night isn't a good one to start trying to whip up a storm on our forums but lets gather some momentum in the next week
« Last Edit: January 20, 2012, 04:10:50 PM by mellivora »

demografx

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Re: Tally of NORD Donations
« Reply #43 on: January 20, 2012, 06:33:49 PM »

I'll be brief as I have not much time:  I don't see us making the target this year UNLESS we get more people to donate who are NOT POIS sufferers, i.e. sympathizers.  The most amazing fund drives I've seen on the internet occur on the site reddit.com   A group (under the banner of atheists giving to charity) raised something like $200k in a day.  Big stuff happens when you crowdsource it.  If I were to head it up, I'd go along the lines that most reddit users are males who often celebrate the action of masturbation (search "fapping") or just sex in general.  If we could get some large-scale sympathy from that crowd, we could potentially see a lot of micro-donations.  Now they are a skeptical bunch, so any plea will have to be well written and backed up.

I have to go, I hope there is some discussion on this when I'm back!



Thanks for the suggestion Nightingale. This is exactly the sort of post I was hoping to read! I'm going to be spending more time over the next week, whenever I can, trying to raise outside funds. I'll have a look at reddit. Please people, if we put our heads together and seriously start working on outside funding through suggestions like Nightingale's we can do this. Even within 2 months. Please post your ideas here. If you can act on them, even better! Thanks


WONDERFUL FUNDING IDEAS AND MOMENTUM!

« Last Edit: January 20, 2012, 06:35:39 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: Tally of NORD Donations
« Reply #44 on: January 20, 2012, 06:51:22 PM »

I don't want to wait until late 2013 or 2014 before we can get dedicated (NORD-funded) POIS research under way. At the moment, that is the best we are heading for.  
We've got 2 months to get to our NORD target this year and save ourselves from waiting this long.

We've had some very generous donations recently but some of these are to be made over a period of months. I'm certainly no less grateful to the donors for this fact but it does mean the current NORD pledge tally can be misleading as it uses the total that will be donated by 2013, not by March this year. We are still currently not in a good position to make the March deadline this year. To me it looks like we're half way at best.

After we reach our $33500 target, it'll likely be some months before a researcher is appointed to work on POIS through NORD. It may be some time after this that work finally begins. I believe I'm right in saying that we really need to make the March 2012 deadline (2 months time) if we're going to see any benefits from NORD funded research within the next two years. There isn't a quick fix. But it'll be quicker if we begin now. Also, things will cost more in years to come. $33500 might not be the minimum required in future years, it might be more.

 We have some things that help some of us (eg. Niacin, immunotherapy) at the moment. But these are not cures so far or 100% effective treatments. And we still don't know what causes POIS. We have much better theories than we used to and even evidence for some of them but all POIS sufferers are not the same and what works for some doesn't work for others. We need to push this if we're going to help everyone. We need to know what POIS is, what causes it, what varieties of POIS there are and use this to  get as close as possible to being cured/ being POIS-free. For us and for future sufferers.

2 months is all we have. So far I have pledged $500. On the condition that we make the March 2012 deadline, I'm upping my pledge to $1500 (seriously, no clappy applause gifs for this please, lets just get that total)


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

badgerstripe

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Re: Tally of NORD Donations
« Reply #45 on: January 24, 2012, 09:03:11 AM »
$50 just donated. I hope we can hit that target!

mellivora

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Re: Tally of NORD Donations
« Reply #46 on: January 24, 2012, 09:29:07 AM »
$50 just donated. I hope we can hit that target!

You just earned your stripes badger! Much appreciated, thanks!

badgerstripe

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Re: Tally of NORD Donations
« Reply #47 on: March 16, 2012, 04:45:39 PM »
The total of $100 pledged has now been donated by me.

Daveman

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Re: Tally of NORD Donations
« Reply #48 on: March 17, 2012, 06:10:00 AM »
OK thanks Badgerstripe. Sure looks better in the "Donated" list than in the "Pledged" list!!  ;D  ;D
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Observer

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Re: Tally of NORD Donations
« Reply #49 on: March 19, 2012, 07:55:05 PM »
$50 just donated. I hope we can hit that target!

I donated just another 25$ from my pledge of 100$. I will submit the rest if we hit the target.
I really would want to help with more but i am just a student right now.

Keep the good job, all of you are amazing! :)

lithium

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Re: Tally of NORD Donations
« Reply #50 on: April 13, 2012, 10:35:52 PM »
I just donated USD$150 on the NORD site. My user name is 'matsoda' on the NakedScientists forum.

I pledge to help a great deal more as my financial situation allows, but i don't see much opportunity for the next 12 months or so.

Daveman

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Re: Tally of NORD Donations
« Reply #51 on: April 14, 2012, 05:19:50 AM »
Great lithium (matsoda). THANK YOU VERY MUCH!

Everything helps and $150 is a great donation.

I have a feeling that THIS is going to be our year.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: Tally of NORD Donations
« Reply #52 on: July 23, 2012, 03:17:18 PM »
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: Tally of NORD Donations
« Reply #53 on: September 02, 2012, 03:50:47 PM »
If the Indiegogo campaign does not bring anything... my parents want to pledge 1 300$ more :)
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Daveman

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Re: Tally of NORD Donations
« Reply #54 on: September 02, 2012, 04:04:18 PM »
That would be wonderful. It almost seems that Demo is right.

In his MANY, MANY, MANY (sorry demo) years in fundraising, the majority of the funds come from the interested themselves or family, friends and neighbours.

Of course it's difficult for us to go to those sources. But by the looks of it, this is where we are going to HAVE to look.

It would be wonderful if they could help you and us in this way.

It shows, that when you talk about it and "come clean" as they say, you get more support than you imagined.




WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

aalkaff

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Re: Tally of NORD Donations
« Reply #55 on: September 02, 2012, 05:24:28 PM »
That would be wonderful. It almost seems that Demo is right.

In his MANY, MANY, MANY (sorry demo) years in fundraising, the majority of the funds come from the interested themselves or family, friends and neighbours.

Of course it's difficult for us to go to those sources. But by the looks of it, this is where we are going to HAVE to look.

It would be wonderful if they could help you and us in this way.

It shows, that when you talk about it and "come clean" as they say, you get more support than you imagined.

Yes, in our sensitive case, I agree with that view in fundraising. I don't know why I haven't thought of that before. I guess I thought "It's my problem and I have to deal with it myself. Nobody should know or be involved."

demografx

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Re: Tally of NORD Donations
« Reply #56 on: September 03, 2012, 12:22:23 AM »

If the Indiegogo campaign does not bring anything... my parents want to pledge 1 300$ more :)


Habibou! Please give your parents our very warmest, most appreciative

T H A N K   Y O U  

to them both for their incredible generosity!!

You, Habibou, have been an utmost incredible friend to this forum!

All the best,
Demo

« Last Edit: September 03, 2012, 12:29:10 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

Stef

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Re: Tally of NORD Donations
« Reply #57 on: September 06, 2012, 01:12:09 PM »
Hello All!

I had the honor this past July to travel to New Hampshire -- ~ five hours from my home town -- to meet a young woman with an undiagnosed rare disorder.  My reason for traveling all that distance (five hours, one way) was to meet this young woman, coincidentally also named "Stephanie," who had held a fund raiser at her local church. She managed to raise $4,300 in one night!  

She'd gone on line, read about NORD, and decided that those funds would go to NORD.  So, we have set up a special fund with her name on it, which will be used to raise awareness through various educational methods about the issue of undiagnosed diseases. Our target audience will be both physicians and non-medical people.  She deeply wanted to meet a NORD representative in person so that she could hand over the check for the fund -- and I was the truly lucky NORD staff member to fulfill this mission.

Since that visit, more donations have come in, in her honor. Her fund is now nearly $6,000.

Stephanie has seen countless specialists --  and yes, when this all began she was told that it was "obviously psychiatric."

That was 10 years ago, when she was 13 years old and the symptoms began. Her parents have spared nothing in trying to get a diagnosis for their daughter -- but to date they have come up empty. Her condition is now at the point where hospice has been brought in.  Obviously, there was nothing psychiatric about her condition.

In my opinion, POIS falls under the term, "undiagnosed disease."  Until there's research that determines the biomarkers, gene, protein, hormone, urological abnormality, or whatever it is that causes POIS --  POIS will continue to be one of the many miserable undiagnosed rare disorders.

My reason for mentioning this young woman's story here is some very simple, yet very profound words from her.  When I asked her how she did what she did, how she was able to put her severely diminishing energy into that fund raiser, her response was -- word for word --


"Ask yourself, what do you want -- and what do you want to do to help others? Then do it!"

I ask that you all think in the same terms -- What do you want?  What do you want to do to help your fellow POIS sufferers.  Then do it!  Do what it takes to reach your research fund goal!  Find the cause of and the treatment for POIS!

If you'd like to read Stephanie's full story (it's not long), you can view it on NORD's website at [url]http://rarediseases.org/patients-and-families/patient-stories/.

Stef
« Last Edit: September 06, 2012, 01:20:03 PM by nordnurse »

Daveman

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Re: Tally of NORD Donations
« Reply #58 on: September 07, 2012, 09:23:45 AM »
Thanks Stef, as Stefanie well knows, things don't just do themselves!

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: Tally of NORD Donations
« Reply #59 on: September 07, 2012, 01:11:26 PM »


Simply click above and scroll down till you see, "Make this a recurring donation"...

THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!
« Last Edit: November 11, 2012, 09:07:33 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