2005 NRS Rosacea Research Grants

[Brady Barrows]

Earlier this year the NRS announced that it will award $146,419 USD for rosacea research grants to be selected by its Medical Advisory Board. The deadline for applying for these grants ended on September 15, 2005.

source >

http://rosacea.org/press/archive/20050513.html

The amount in 2005 is the highest amount ever awarded by the NRS for rosacea research grants in a single year since its inception. The next highest amount ever awarded was $101,158 USD in 2003. Last year, 2004, the NRS spent $85,307 USD on rosacea research grants. Based upon its track record it is to be noted that this increase in spending on rosacea research in 2005 is different from previous years. For the past seven years the NRS has received in donations a total of $5,569,108 and spent a total of $463,622 on rosacea research. That means that about 8% of total donations was spent on research.

This increase for rosacea research in 2005 is quite unusual. We will see eventually what percentage of the total budget for 2005 this figure will be when the NRS releases its Form 990 to the IRS. For a critical review of the NRS go to this url >

http://www.rosaceans.com/html/nrs.html

[Kris Jacobs]

I will be patiently waiting to see what percent of the total budget actually goes to rosacea research.

Maybe the NRS realizes that they have now been exposed.

Maybe that is enough incentive for them to initiate reforms within their organization.

If the NRS is only truly concerned about money and catchy marketing hypes then we can conclude that they are being fiscally irresponsible.

It's time that we focus on finding a cure. Rosacea has the potential to be a very financially rewarding industry. As long as some of these organizations keep from finding a cure, they will profit.

We are all aware that there are literally dozens of products out there that claim to cure rosacea. Think about what would happen if we actually found a cure. All of these people would go bankrupt. Therefore we have many individuals fighting against us.

Money usually always seems to lead to corruption. Keep focused people, and please watch out for those money hungry weasels. I won't name names because I don't want to start trouble. But they know who they are.


We have many people out their that are trying their hardest to keep this hope from becoming reality.

thanks for the post Brady

and thank you Dr. Nase for being one of the few individuals who isn't in this for the money. We know you are fighting for us because you are one of us and you honestly care about people.

and For those of you who have not got your rosacea into remission, Keep fighting, we are here for you.

Kris Jacobs

[Brady Barrows]

Proft and Non Profit

Kris,
That there are watchdogs like me exposing what the NRS is doing with donated funds may be the logical single factor why the increase in rosacea research for 2005 happened. My guess is that they got a huge donation and felt the need to increase the spending on research to reflect this. I still think that the percentage of the total funding on rosacea research will be less than 20% of the total received, but that is only my guess. We won't know for at least six months what the total funds received were for 2005 and we might have to wait even longer than that.

I am glad you joined the RRDi which is dedicated to spending 90% of its funding on rosacea research and 10% for administration and operations. This can only be done if there are enough volunteers. When you get rosaceans together to discuss how to do this, it is not an easy process since there are such diverse views on what to research and who should make the final decision on what to research. I set the RRDi with the total power invested in volunteer board members. The Medical Advisory Committee will only advise the board on what to research. The board makes the final decisions. This is no different from the NRS. However, the big difference is that rosaceans can choose who serves on the volunteer board of directors. You can can't do this with the NRS, the RRF, or any other non profit organization that engages in rosacea research.

You might want to list the dozen rosacea 'cures,' since I have started a list of my own that I know about but it does not approach a dozen. That would be very cool to make a list of the 'cures' so rosaceans can be wary of them, sort of like checking at those websites that expose fraudulent emails.

Yes, the love of money is the root of all sorts of problems, yet physicians, pharmaceutical companies, laser and IPL manufacturers, and non prescription rosacea products all make profit. Many rosaceans complain about how a physician, a laser or IPL treatment, or a non prescription rosacea product did not help their rosacea, and in some cases made it worse. Does that mean that we should shut down everyone who makes a profit on rosacea? No. We want to encourage these ones to find something better. What we need to do is expose scams, which are 'a fraudulent or deceptive act or operation.' This could be one of the items of business for the RRDi. All this needs to be discussed and concerns about this should be directed to the board of the RRDi. A new forum has been implemented for corporate members of the RRDi to discuss such things. Go to this url >

http://irosacea.org/forum/index.php

As to me and Dr. Nase, we have both made a profit on rosacea. Is that bad? Many feel that making a profit on the suffering of rosaceans is bad. However, they have no issues with a physician making a profit on rosacea nor do they have issues with pharmaceutical companies making a profit, nor IPL and Laser manufacturers making a profit. It is legal and ethical to make a profit on rosacea if it is done just like that, legally and ethically. No scams.

As to engaging in a non profit organization like the RRDi, one must be squeaky clean, just like the physicians who are on the medical advisory boards of the NRS and RRF. And the board of directors should be squeaky clean too! I have always been baffled at how rosaceans hardly raise a cry about the board of directors of the NRS yet get into turmoils with rosaceans who are trying to form non profit organizations to engage in rosacea research with shoe string budgets to do what the NRS does yet do it better, more effeciently, more effectively and with volunteers. While this remains to be seen, it is a start.

I will be patiently waiting to see what percent of the total budget actually goes to rosacea research.

Maybe the NRS realizes that they have now been exposed.

Maybe that is enough incentive for them to initiate reforms within their organization.

If the NRS is only truly concerned about money and catchy marketing hypes then we can conclude that they are being fiscally irresponsible.

It's time that we focus on finding a cure. Rosacea has the potential to be a very financially rewarding industry. As long as some of these organizations keep from finding a cure, they will profit.

We are all aware that there are literally dozens of products out there that claim to cure rosacea. Think about what would happen if we actually found a cure. All of these people would go bankrupt. Therefore we have many individuals fighting against us.

Money usually always seems to lead to corruption. Keep focused people, and please watch out for those money hungry weasels. I won't name names because I don't want to start trouble. But they know who they are.


We have many people out their that are trying their hardest to keep this hope from becoming reality.

thanks for the post Brady

and thank you Dr. Nase for being one of the few individuals who isn't in this for the money. We know you are fighting for us because you are one of us and you honestly care about people.

and For those of you who have not got your rosacea into remission, Keep fighting, we are here for you.

Kris Jacobs

[todmiller]

Brady,

I think another goal should be to try to convince insurance companies to help us pay for IPL. IPL is considered cosmetic in the eyes of insurance companies. And yet, my insurance company did mention the possibility of reimbursement. How difficult it will be to actually acquire this reimbursement, and the total amount remain to be seen.

I think since there are so few of us, we should at least get SOMETHING from our insurance providers. But we need to approach them tactfully and convey our plea in a way that they will understand.

What are your thoughts on this?

[Brady Barrows]

Patient Advocacy Group

Brady,

I think another goal should be to try to convince insurance companies to help us pay for IPL. IPL is considered cosmetic in the eyes of insurance companies. And yet, my insurance company did mention the possibility of reimbursement. How difficult it will be to actually acquire this reimbursement, and the total amount remain to be seen.

I think since there are so few of us, we should at least get SOMETHING from our insurance providers. But we need to approach them tactfully and convey our plea in a way that they will understand.

What are your thoughts on this?

To do this in an organized way, somehow uniting rosaceans on this subject would require effort, volunteers, and charisma. All three items are in short supply with most rosaceans. What I have noticed about rosaceans is that they, generally speaking, want everything done for them with little or no effort on their part. A few actually spend energy, time, money, and motivation to do something about their condition in an organized way. But most simply want someone or something (a physician, a treatment, a pill, a topical, or in this case an insurance reimbursement) to do it for them. This is understandable, since that is how this consumer driven economic system is driven. It is like the old advertisment, 'Have it your way' or 'You deserve it.' Insurance companies are obviously driven by profit. To convince them that rosacea IPL treatments should be another treatment covered will not be an easy task. If you want the RRDi to focus its energy on this, I suggest you join and convince enough rosaceans that this is what the RRDi should focus on. I have no objections to this since the number one goal in the Mission statement is, "To be the first non profit organization for rosacea patient advocacy." Based upon the history of the RRDi, this will not be something that happens overnight, but may be part of the patient advocacy agenda. Hope you can volunteer to do this. You can join by going to this url >

http://www.irosacea.org/html/join.html

Or getting back to the NRS which is what this thread was originally about, you could contact them and ask them if they would help you get insurance companies to reimburse you for IPL treatment. Do you think they are listening to rosaceans? They might. Who knows? It would take effort, time and a willing spirit to contact the NRS about this. But you do have choices now. You can ask the RRF, the NRS or the RRDi to help. there are actually three other known non profits for rosacea but I doubt if they would listen to you, the IRF, Rosacea Awareness, and Skin Cell. The only one that gives you a voting right on who sits on the board of directors is the RRDi. The RRF and the NRS are closed boards and rosaceans have no say on who sits on the board.