Author Topic: NORD Donation Program  (Read 9458 times)

Daveman

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NORD Donation Program
« on: September 20, 2011, 04:01:16 PM »
This topic is open to discuss details of the following Assertive Donation Program proposal.
« Last Edit: September 20, 2011, 04:39:20 PM by Daveman »
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!

Daveman

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Re: NORD Donation Program
« Reply #1 on: September 20, 2011, 04:38:34 PM »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

Comment on  the details of this Assertive Donation Program. can follow. Thanks for your input. The database will be generated as soon as possible.

POIS Forum Administration,
Demografx
Daveman
« Last Edit: September 20, 2011, 04:46:27 PM by Daveman »
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!

EDS

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Re: NORD Donation Program
« Reply #2 on: September 21, 2011, 06:21:30 AM »
Great idea guys!

I cannot believe that we are having such difficulty getting POIS sufferers to contribute.
If one considers the lost income over a lifetime due to this plague, I would have thought everyone would jump at a chance to get real help.

$100 is such a small sacrifice compared to what other things cost... Just Do It!!!!!!!!!!!

Definitely count me in!!

demografx

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Re: NORD Donation Program
« Reply #3 on: September 21, 2011, 06:21:19 PM »


Great idea guys!

I cannot believe that we are having such difficulty getting POIS sufferers to contribute.

If one considers the lost income over a lifetime due to this plague, I would have thought everyone would jump at a chance to get real help.

$100 is such a small sacrifice compared to what other things cost... Just Do It!!!!!!!!!!!

Definitely count me in!!



Thanks, EDS!

« Last Edit: September 21, 2011, 06:33:09 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

mellivora

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Re: NORD Donation Program
« Reply #4 on: September 23, 2011, 02:59:06 PM »
I see the thinking. And the ability to pay in installments is good. But this doesn't address the issue that I think holds people back from donating. Namely, what happens if the total isn't reached. Does the money go to other NORD projects or does it forever stagnate in a non-maturing POIS fund? I don't mean to be negative and I've made a pledge. But I do think this is what is holding some people back. How else can one explain the discrepancy between our pledged total and the amount actually donated? Is there any way NORD can guarantee a return of donations in the event of the total for a POIS research grant not being reached after a set number of years? For example, if a cure/treatment were to be found by an independent researcher (Waldinger/Goldmeier etc) before the total was reached, people might stop donating. Not that any of us would really care by that point if a cure was really found. Of course I hope it doesn't take so long to reach our total.

In theory of course we are talking about a relatively small amount per person if everyone gives so none of this should be an issue. Most of us have probably spent that amount on things we don't actually need and wouldn't miss a stray $100 in a year's time. But I suspect it somehow is a bit of an issue for many. It is a good point that income lost because of POIS (and future losses because of POIS) far outweighs any donation people are likely to make. The thought of a POIS-free life should be enough for any sufferer to pull their fingers out.
« Last Edit: September 23, 2011, 03:26:21 PM by mellivora »

Daveman

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Re: NORD Donation Program
« Reply #5 on: September 23, 2011, 07:11:00 PM »
Well with our pledge program, the idea is to permit ourselves to be assured that the total will be reached before we ACTUALLY donate.
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!

mellivora

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Re: NORD Donation Program
« Reply #6 on: September 24, 2011, 05:05:39 AM »
Ah, thanks for clarifying that Daveman. I see that I overlooked/misread the following line in your original message. But then I am currently in a POIS cycle....
Upon pledging the required amount, monthly payments will be begun.
In that case, given that actual donations do not need to be made until the total is reached in pledges, I back the proposal. Good work. I do still think though (in fact I think its even more important with the new system) that there should be a running total in the news box (top right of the forum) of the PLEDGE total. Is that easy for you to add? And perhaps also display the total number of people who have donated. I know there is a thread where you give the totals but I think it will be more motivating to have it permanently on display.
Have a good weekend everyone.

Daveman

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Re: NORD Donation Program
« Reply #7 on: September 24, 2011, 07:15:28 AM »
I'll put the total pledge in the box as soon as I can be alittle more positive of exactly how much it is.

The database program is in process, and as soon as it's in place, we can have a sure and positive count.

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!

chen1995

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Re: NORD Donation Program
« Reply #8 on: June 05, 2012, 08:44:44 PM »

 Exuse me I have a question. In terms of Wikipedia, Dr.Waldinger and Dr. Dexter have been working on POIS already, haven't they? (One is on the Auto-immune cause theory and the other is on hormal imblance). What is this donation for? Which doctor is going to lead the research?

Daveman

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Re: NORD Donation Program
« Reply #9 on: June 06, 2012, 03:36:29 PM »

 Exuse me I have a question. In terms of Wikipedia, Dr.Waldinger and Dr. Dexter have been working on POIS already, haven't they? (One is on the Auto-immune cause theory and the other is on hormal imblance). What is this donation for? Which doctor is going to lead the research?


The NORD grant revive board will make a VERY educated selection by TOP research doctors, of the best approach to take in the investigation of POIS. The doctors who decide are world experts in medical investigation and rare disorders. They are in a much better position than even we to decide which is the best direction.

The doctors you mention along with many others will be among those who may apply for the grant, and they must make a detailed presentation of what their approach will be. The board will then pick the best possibility.

We have every confidence in the members of the board who will be deciding. They will permit nothing but the best possible study for POIS.
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: NORD Donation Program
« Reply #10 on: July 23, 2012, 03:16:32 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

demografx

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Re: NORD Donation Program
« Reply #11 on: October 31, 2012, 02:56:48 PM »

 Exuse me I have a question. In terms of Wikipedia, Dr.Waldinger and Dr. Dexter have been working on POIS already, haven't they? (One is on the Auto-immune cause theory and the other is on hormal imblance). What is this donation for? Which doctor is going to lead the research?


The NORD grant revive board will make a VERY educated selection by TOP research doctors, of the best approach to take in the investigation of POIS. The doctors who decide are world experts in medical investigation and rare disorders. They are in a much better position than even we to decide which is the best direction.

The doctors you mention along with many others will be among those who may apply for the grant, and they must make a detailed presentation of what their approach will be. The board will then pick the best possibility.

We have every confidence in the members of the board who will be deciding. They will permit nothing but the best possible study for POIS.


We have had many discussions with NORD about this. Daveman and I are very confident of the process. If you wish to understand more, please see nordnurse's description in her thread, or visit www.rarediseases.org
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