Author Topic: NORD Research Grant  (Read 137585 times)

demografx

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Re: Funding a POIS research grant
« Reply #30 on: June 02, 2011, 01:09:40 PM »


I'd like to pledge $1,000 towards research.


Thank you so much, Limejuice!!
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: Funding a POIS research grant
« Reply #31 on: June 02, 2011, 01:24:53 PM »
before opening an account have you read this.
http://www.rarediseases.org/medical-professionals/research-grants/policy

go to donating for rare disease research.
it pretty much says if account dosn't reach a certain amount after a certain amount of period, the money money will be transfered to a general account of something similar.
if this rule is not flexible May be we should tally it up first within us before starting an account.

CC, good point!
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

biocentric

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Re: Funding a POIS research grant
« Reply #32 on: June 03, 2011, 03:20:32 AM »
Speaking purely for myself, I would like most to see:

1) A repeat of Waldingers test but including non-POIS volunteers
- Ideally Dr.W could test 10+ non-poisers with the same procedure as his original 33 man one, i think this is unlikely though(?), will he want to disprove/prove his own study?
- A better idea could be to get a U.S based doctor who has already had a positive skinprick test done on a forum member. like Dr.Bewtra for example.
Get 10 Non-POIS and 10 POIS
or even better 20 Non-POIS and 20 POIS
They dont have to be equal as its the "percentage that test positive" thats important,
..But I feel if we only get non-POIS to compare with Waldingers original 33 man test then I can see us being in the same old position- doubting the results, wondering whether they are correct, comparing the different methods (the method will be different in some way), ratios etc..
Lets just do a new fair test comparing both NonPOIS and POIS under the SAME conditions.
Hopefully Dr Waldinger wont see this as a form of descent or backstabbing, its purely science!

Surely this wouldnt cost anything near $33k, its a couple of hours work for one/two allergist plus a bit of money for volunteers.
When advertising for non-POIS volunteers it should read recently a rare illness has been been linked to an allergy of a natural protein found in the body, we need volunteers that dont have this rare illness to prove they test negative, i.e male volunteers are needed for an allergy test
dont tell them about semen! until they are face to face with the doctor!

Maybe NORD can organise this test?

2)A couple of POISers to test out Monoclonal Antibody therapy
I know its new on the forum, but it does say its meant to "stop allergic attack dead in the tracks", sounds exciting.

Daveman

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Re: Funding a POIS research grant
« Reply #33 on: June 03, 2011, 01:09:50 PM »
Everybody, yet again Stefanie Putkowski from NORD comes through!!
Here is what she has to say about a research fund for POIS at NORD!


Congratualtions Everybody,
The fund is good to go -- it can be now be done online
POIS has formally been added to the list of research funds.  And someone has already made an anonymous donation!

FYI, go to: Research Donations

In the spot for "Research Fund," hit "Please Select a Research Fund."  It's an alphabetical drop down -- go to P and find your fund.



Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org
 
Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions
« Last Edit: June 04, 2011, 10:50:39 PM by demografx »
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: Funding a POIS research grant
« Reply #34 on: June 03, 2011, 01:20:44 PM »
Remember everybody. We are not committed to any specific path of research yet. We will be allowed a back and forth interaction in the post evaluation of the research specification.

And from what I understand, someone very familiar with our cause will be responsible for first base drafts.... Stefanie!

« Last Edit: June 03, 2011, 10:16:08 PM by demografx »
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!

Vandemolen

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Re: Funding a POIS research grant
« Reply #35 on: June 03, 2011, 05:49:09 PM »
Great! Maybe NORD can make it possible to donate money online from another country then the US. Now you can only choose from US States.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Daveman

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Re: Funding a POIS research grant
« Reply #36 on: June 03, 2011, 07:56:18 PM »
The data fields are necesary for tax deduction reasons, which probably don't hold for out of country donations.

One could try to donate, filling fields that don't correpond to their country with "whatever". Often you can get away with that, and when it doesn't matter for tax deduction, no problem.

Anyways, Stefanie can manage donatios personally for those that don't work with the internet form. You can PM her here.

Also I'm SURE she will respond here about this anyways.
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!

Ccconfucius

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Re: Funding a POIS research grant
« Reply #37 on: June 03, 2011, 09:14:35 PM »
how do we know how much is in account, a meter will be cool.

demografx

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Re: Funding a POIS research grant
« Reply #38 on: June 03, 2011, 10:30:38 PM »

how do we know how much is in account, a meter will be cool.


Just ask.

Meanwhile, I donated a modest amount, online, to NORD-POIS today with my credit card.
https://rarediseases.org/about/support/research-donations/fg_base_view_p3
« Last Edit: June 03, 2011, 10:35:52 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

Daveman

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Re: Funding a POIS research grant
« Reply #39 on: June 04, 2011, 08:32:01 AM »
how do we know how much is in account, a meter will be cool.

Let me see what I can do. For now I'll out a total in the "news box".

The "news box" is visible in the expanded header, top right!

The little arrow to the left of the "Home" button, opens and closes the Header.

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: Funding a POIS research grant
« Reply #40 on: June 04, 2011, 09:19:26 AM »
Just a note on the "online donation function" at NORD.

NORD had normally accepted donations for grants manually. The "online facility" is new. AND, Demo had a couple of small problems when he donated. But the IT department reacted VERY quickly to fix the problems (related to iPhone). There shouldn't be anymore. But we wanted to mention it just in case. If there is any problem whatsoever, drop a PM to Demo or I and we'll get immediate attention.

Also in answer to other concerns about international donations etc, I copy this note from Sefanie and NORD. She said:

I'll ask on Monday about international donations to NORD.  We receive them from all over the world, but I am not sure if they can come through the website because the money might need to be converted first to US dollars. I truly don't know if that's the case, or how that works -- but will find out and get right back to you.

Since we do receive funds from all over the world,  this is not an uncommon occurrence at NORD.

FYI, if the money needs to be converted to US dollars first, then I believe that the most economical and the easiest way to do this -- and probably the most anonymous -- is to purchase a postal money order through the local post office.  There will be a modest fee (as an example, it's around $4.00 in the US to send a postal money order from here to overseas).
.
Regarding the absolute anonymity, if someone wants their donations to be totally anonymous (meaning the ID is not even known to NORD), I think the postal money order route, mailed via postal mail, is the best and only choice. It's not a bad choice, by the way. It's a very good, safe choice--for anyone, in any circumstance.

Our website definitely won't accept charge card donations without all the required information. That is a given everywhere and not unique to NORD.  So, one can't do an online donation totally anonymously (anonymous to the point that NORD doesn't have the contact information of the person).  An anonymous postal money order sent via snail mail is the answer in that case.

What I said, or tried to say previously, about contacting me re: anonymity -- is related to not receiving an acknowledgement (a thank you) from NORD if a donation is made through the web site.

Thus, if someone feels that they would like to donate via the website, but doesn't want to be receiving an acknowledgment of the donation for the sake of anonymity at their end, they can feel free to contact me directly and I'll make sure nothing is ever sent.They don't need to tell me the amount of the donation, as this is kept confidential also (I have no need to know how much an individual donates).

We send these acknowledgments so that people (within the US) can use it for tax records, but we also send them simply as a "thank you" to everyone.

By the way, I learned today that we receive several anonymous donations yearly for various funds and for unknown reasons.  This is not a new concept for us.

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!

Habibou

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Re: Funding a POIS research grant
« Reply #41 on: June 04, 2011, 06:40:45 PM »
This is an excellent thing to start now we have more specific researches to do !

I agree with Vandemolen, we should gather all POIS suffers to give an equal part since we are over 200 getting this condition. 100$ each would already be a lot, and for the others who are willing to give more, it would be possible !

Of course, we can't push anybody to give money for it... but according to me, it is intelligent money investment. Indeed, we try many things , sometimes more or less expensive, with a probability to cure of 1/N (N very high sometimes). With that, we would be sure, the money would build up a serious investigation for a real finding and a possible cure (more or less easy, depending on the case found). 100$ is the price of 30 minutes with a specialist (or even a lot more) who will tell us "sorry i can't do anything for you". Then those 100$ would be wasted !  Sorry if i am messy  ;D
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

Daveman

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Re: Funding a POIS research grant
« Reply #42 on: June 04, 2011, 07:45:03 PM »
Not at all. Perfectly clear.

I don't have a lot right now, but even I could put 100$ for this, and over the whole time while it's developing maybe even more. As you say, it's not money that goes to something expendible or a doctor that needs to buy his 5 yr old another game for his Xbox 360.

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: Funding a POIS research grant
« Reply #43 on: June 04, 2011, 09:24:36 PM »
Not at all. Perfectly clear.

I don't have a lot right now, but even I could put 100$ for this, and over the whole time while it's developing maybe even more. As you say, it's not money that goes to something expendible or a doctor that needs to buy his 5 yr old another game for his Xbox 360.


Reminds me when I got a get-well card after my open-heart surgery, it included a funny mention of my good deed in helping the surgeon get that "dream" hi-fi system for his den.  ;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: Funding a POIS research grant
« Reply #44 on: June 04, 2011, 09:32:16 PM »

NORD-POIS WILL BE THE NEXT BIG QUANTUM LEAP. So let's make it a good GREAT one!


mod-mod-edit :)
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