AARS spends $30K on research

[TheMediumDog]

I think I'll give up on this.

[Peter]

Originally Posted by TheMediumDog

I think I'll give up on this.

I think that's what we all did last time but I'm surprised Brady hasn't taken up the opportunity on this thread to show what the RRDi can offer versus the NRS?

Missed some of this thread yesterday so catching up and can see another one has started on the NRS distribution of funds.

[Peter]

Hello Brady

Just catching up on this.

Originally Posted by Brady Barrows

Yes, I will, just like last year, 'home in on the NRS' but you will have to come to your own conclusion since I will not use the term 'shyster' nor any derogatory terms. You may dig up some negative emails I posted about the NRS about six or eight years ago but I have not used any such terms in the past five years. I will simply stick to the facts.

I never actually said that you said "shyster" previously but when all this kicked off last time you insinuated that there could be a misuse of donations or maybe a "massaging" of the figures within the NRS? I need to look at the other thread you have now started.

You have always been pretty negative about the NRS but then we are all entitled to our opinions providing that when one makes accusations then one can back it up. One could argue that you have more reason to be negative because you run a rival organisation / charity.

Originally Posted by Brady Barrows

Most people are probably like you and don't bother to check anything when someone asks for a donation.

Sorry but most people may not be probably like me. I have selected well known respected charities that I donate to which I choose and nobody tells me what I should do with my money. I ignore cold callers, obscure charities and those that are "in my face" for donations.

Regarding the amount of money the NRS put towards funding of rosacea research then last year I spent several hours looking at their website and starting up a spreadsheet containing details of the amounts and the relevant studies since 1999 - 2007 I seem to remember it was around $1m in total but need to dig it out again although it needs updating. Not sure if I can attach an Excel spreadsheet to a post as it might be of interest to members? Anybody know?

Regards

Peter

[TheMediumDog]

Actually, changed my mind. I'll pursue this, since it is sufficiently important.

Brady wrote:

Putting pressure on the NRS is up to you

Fair enough, Brady. Obviously it is up to me, whether I would choose to devote my time to something like this. But what I am asking is whether, from your knowledge of how these things work, it would be possible for rosaceans as a group to somehow put pressure on the NRS, in order to make it sharpen up.

I presume that one of the motivations for beginning the RRDI was because you perceived the poor performance of the existing rosacea charities. So you clearly judged (I am supposing), that you couldn't effectively pressure the NRS/other rosacea charities, and that starting a whole new group was just a better way to go.

If the RRDI hasn't yet distributed any research funds, though, I wonder whether maybe that judgement hasn't worked out (genuine question, not snarking).

I think discussing the RRDI in this thread is not a problem - because, with the issue in hand, its related to the performance of the NRS.

(Brady, if you don't want to get involved in any discussions on these matters, just say - only, its really confusing when you're "just stating the facts". Its like trying to talk to a Modernist novel).

[Brady Barrows]

Originally Posted by Peter

I think that's what we all did last time but I'm surprised Brady hasn't taken up the opportunity on this thread to show what the RRDi can offer versus the NRS?

Missed some of this thread yesterday so catching up and can see another one has started on the NRS distribution of funds.

The purpose of this thread was to show that another non profit organization is doing rosacea research and point out what the Form 990 shows about the AARS. The thread has continued with further discussion about how other non profits spend their donations. I mentioned the NRS since it is the only other non profit that has spent donations on rosacea research. I really didn't want to discuss the RRDi but TheMedium Dog and you have brought it up and I thought it best to start a different thread about the RRDi.

[Brady Barrows]

Originally Posted by Peter

Hello Brady

Just catching up on this.

Don't want to go off subject but I suppose it's slightly related in some ways. Last week three of the forums allowed a woman from New Zealand with rosacea to post details of how she had been conned out of some money by someone we both know well. I also put it on the Topix rosacea forum and here are the links if you haven't seen them?

http://www.rosaceagroup.org/The_Rosa...ad.php?t=19802

http://rosacea-support.org/community...hp?f=37&t=1856

http://health.groups.yahoo.com/group...message/104939

http://www.topix.com/forum/health/ro...953IUV1CU7JFGQ

Many of us feel very strongly about this type of fraud as I'm sure you do to. Are you prepared to show the links on your Forum as a warning to others or does she need to join and make the post herself - assuming you will allow it?

Regards

Peter

I really don't want to continue this subject since it is addressed in another thread already and it may confuse rosaceans into thinking that what happened to this woman is the same as the activities of a non profit organization. What the AARS and the NRS does with its donations is perfectly legal and to add this to the thread is not proper.

[Brady Barrows]

Originally Posted by TheMediumDog

Actually, changed my mind. I'll pursue this, since it is sufficiently important.

Fair enough, Brady. Obviously it is up to me, whether I would choose to devote my time to something like this. But what I am asking is whether, from your knowledge of how these things work, it would be possible for rosaceans as a group to somehow put pressure on the NRS, in order to make it sharpen up.

I presume that one of the motivations for beginning the RRDI was because you perceived the poor performance of the existing rosacea charities. So you clearly judged (I am supposing), that you couldn't effectively pressure the NRS/other rosacea charities, and that starting a whole new group was just a better way to go.

If the RRDI hasn't yet distributed any research funds, though, I wonder whether maybe that judgement hasn't worked out (genuine question, not snarking).

I think discussing the RRDI in this thread is not a problem - because, with the issue in hand, its related to the performance of the NRS.

(Brady, if you don't want to get involved in any discussions on these matters, just say - only, its really confusing when you're "just stating the facts". Its like trying to talk to a Modernist novel).

TheMediumdog,

Ok. I will update you with the nutshell version of why the RRDi was formed. As far back as 2002 I began reading Form 990s reported to the IRS by the NRS. A lot of discussion was going on back then. At that time RSG was 'the' rosacea support group. I was hoping that rosaceans could get together and form their own patient advocacy group and do their own research asking David Pascoe to head up this movement. That year Warren Stuart, who owns this forum, had the tech skills to set up a chat and we invited
everyone to come and it was decided at that chat to form a non profit and do it. However, it was obvious that David Pascoe should head up the organization. A split occurred because David did not want me involved with such a movement and with David's lead formed the RRF. That group lasted several months and dissolved due to problems. At the same time Warren Stuart and myself formed the RRDi and it took over two years but we got a 501 (3) (c) recognition from not only the State of Hawaii but also from the federal government office of the IRS. This is not an easy task and all of this was done with volunteers who contributed to this cause. However, volunteering is not easy for most rosaceans. Very few actually come up to the plate. Most rosaceans want others to do the work. Also, contributions have been very little. You can read our financial statement which we are very up front about.

However over the past five years what has been accomplished is a very impressive list of MAC members. These medical professionals volunteer for us when they have the time. We can consult with them if we have questions. Getting this MAC together is worthy of note.

The Board of Directors are all suffering from rosacea, unlike any other non profit organization for rosacea. One is a medical doctor, another is a doctor of osteopathic medicine and another is a PhD in Developmental Biology. Getting this board together took five years and it is an accomplishment worthy of note.

However, about two years ago I came up with idea of making a journal with the MAC members primarily volunteering to contribute articles. It has took this long to accomplish since, as I said before, volunteering isn't easy. Not all the professionals in the MAC had the time to contribute. We have also allowed RRDi members who suffer from rosacea to write articles for the journal. We are in the final stages of publication and the journal will be released either late this month or early next month. Joanne Whitehead, Ph.D., is the editor in chief and has contributed an article and many hours of dedication to this project without receiving a dime. A few core volunteers have volunteered as proof readers. We have a striking cover for the hard copy version and it will also be available in an ebook pdf. This is rosacea research at the most basic level, with some novel articles that we hope to attract not only the medical community but also the public. It is called the Journal of the Rosacea Research & Development, Volume 1, No. 1. We hope this to be the first among many. The proceeds from the sale of this journal will go towards rosacea research.

The RRDi has taken a long time to reach this point. But we are in it for the long haul and we offer an alternative to the other non profit organizations. Choose for yourselves who you want to support, but we are still here volunteering. That makes the difference.

[Brady Barrows]

Originally Posted by Peter

Hello Brady

Just catching up on this.

Regarding the amount of money the NRS put towards funding of rosacea research then last year I spent several hours looking at their website and starting up a spreadsheet containing details of the amounts and the relevant studies since 1999 - 2007 I seem to remember it was around $1m in total but need to dig it out again although it needs updating. Not sure if I can attach an Excel spreadsheet to a post as it might be of interest to members? Anybody know?

Peter

Peter,
I have kept up on this subject. The NRS has spent from 1998 through 2008 which is eleven years a total of $873,246 on rosacea research. The total donations received by the NRS over this same period was $8,571,634. That means for every dollar received in donations the NRS spent about 10 cents on rosacea research. If you want the details you can click here.

[Peter]

Originally Posted by Brady Barrows

I really don't want to continue this subject since it is addressed in another thread already and it may confuse rosaceans into thinking that what happened to this woman is the same as the activities of a non profit organization. What the AARS and the NRS does with its donations is perfectly legal and to add this to the thread is not proper.

Hello Brady

No it wasn't my intent to cause any confusion, put you on the spot or sidetrack this thread but it was just that as I had your attention then I thought it was worth a mention. Internet fraud is very serious in my opinion especially when it involves innocent rosacea sufferers. Are you with us on this particular issue and will you allow this woman's story to go up on your Forum? By the way she isn't the only one who has been conned and if we all stick together then this can be stopped or at least we can make everybody aware of what is going on.

Thanks

Peter

[Wistar]

Originally Posted by Brady Barrows

Peter,
I have kept up on this subject. The NRS has spent from 1998 through 2008 which is eleven years a total of $873,246 on rosacea research. The total donations received by the NRS over this same period was $8,571,634. That means for every dollar received in donations the NRS spent about 10 cents on rosacea research. If you want the details you can click here.

If the National Rosacea Society spent 0 cents on the dollar, the NRS would be a scam and it would be safe to call them thieves. If they spent 80 cents on the dollar they would be A+ rated. Which end of the scale do they occupy? At which point do you decide an organization is a rip-off? It is clear to me.