Guide

It would be good to have some excellent photos to show the different stages/subtypes of rosacea. We will slowly build up a library from the members here, but I think it would be best to get permission from a doctor (or the National Rosacea Society) as they will photos of appropriate quality.

All we need is permission from the individual that the RRDi may publish the photo. Why would the NRS or a doctor need to be involved? We could publish each photo as we see fit either in print, pdf, or on the web, if we have written permission from the individual. We need to keep all the permission emails in a safe place. If something comes up we need each photo categorized, labeled with an identity number or referrence to who gave the permission.

And Warren, do you know how to fix the "quote" error we are getting? Steve has been busy and can't get around to fixing this.

Adrian,

I would like to propose that that the RRDi compose a rosacea photo campaign asking rosaceans to donate a photo of their rosacea face to the RRDi so we can choose the ones we would publish in our new brochure. Donors of such photos must understand that permission is being given to use the photo in any way the RRDi sees fit, for instance, on our web site or in a publication. We would also have to decide if the eyes should be blacked out or not.

I imagine that such a campaign, once announced and spread throughout the internet, would bring in dozens, if not more than enough photos to choose from for our brochure. The photo section in the Rosacea Forum is a good place to start to ask if we could use those photos, not to mention the rosacea yahoo groups.

Dr. Cordain suggested the following:

"Neil Mann's study was funded by the Meat and Livestock Association of Australia & cost about $100,000 and started with an n=47. I believe that a similar study could easily be pulled off with rosacea patients. A well executed pilot project would make a tempting carrot for further diet/rosacea projects..."

The two studies are the following:

Smith R, Mann N, Braue A, Varigos G. Low glycemic load, high protein diet lessens facial acne severity. Asia Pac J Clin Nutr. 2005;14 Suppl:S97.

Smith R, Mann N, Braue A, Varigos G. The effect of a low glycemic load, high protein diet on hormonal markers of acne. Asia Pac J Clin Nutr. 2005;14 Suppl:S43.

Dr. Peter Crouch has announced with regret that he is unable to volunteer on the RRDi Medical Advisory Committee due to professional constraints and other personal commitments. He wishes the best for the RRDi and is sad to have to leave the MAC.

"joannew" said:

Just a technical question:

Why are individuals considered corporate members?  

I'm no corporation...

When setting up the non profit corporation in Hawaii, there is a choice to either allow corporation members or not, and I elected to allow corporate members so that individual rosaceans may help direct the RRDi. Corporate members of the RRDi elect the board of directors which is the only legally established 501 c  (3) non profit organization for rosacea research that allows this. Other non profit organizations are closed board of directors that do not allow anyone to have any choice who the board of directors are who decide how the money is spent for the organization.

In order to be a legal corporate member of the RRDi you are required to identify yourself with your name and mailing address so that the RRDi can contact you. Your name and address is held in confidence by the RRDi and will never be disclosed to anyone without your permission. So tecnically, you are a member of the RRDi which is a non profit corporation established in the State of Hawaii.

Hey there guys. Probably the employees who read such letters have the question "what's in it for my company?" embedded in their little heads and this is all they think about after thery read the words "donation" or "money". I think that just adding a link to the company's site isn't enough.  

I think it would be better to present the marketing(like free publicity) possibilites for their companies. We should underline that we have direct contact with the largest 2 rosacea discussion boards with 7000+ members.  

Eventually, we could also offer to list their products with brief descriptions on a section of the website.

I also think that companies usually donate for Awareness campaigns. This is a sort of free publicity for them, done through a respectable non-profit. Maybe we should state that money will be used for awareness campaigns and research?

I'll post some more thoughts tomorrow. What do you think?

Regards,

Adrian

I like your ideas Adrian and we need to funnel your energy into something so we can use it. Maybe you would synergize others to help.

As to mentioning our 'direct contact with the largest 2 rosacea discussion boards' we should remember that the RRDi is officially connected to the Rosacea Forum as the public forum to discuss rosacea. However, the RRDi is not connected to any other board. Many of the members of the RRDi are members of other boards. Not all these other boards are supporting the RRDi directly or indirectly.

I think we should indeed look into AWARENESS campaigns since companies sponsor such events. The NRS has a 'Rosacea Awareness Month' in which they no doubt get such sponsorship from pharmaceutical companies.

At this point, we are just beginning to send out letters to find out what the response is from the major pharmaceutical companies. Jenny's letters are a good start and we will probably be doing this for months, if not years, before we find out what we are doing.

Another route to take is to hire grant writers which is what many non profits do, along with hiring many other professionals to do the work that the RRDi is doing with volunteers. Volunteers are nice, but the sad fact is that volunteering has its limits. Most people don't have the time to volunteer and need to be paid for their services.

Patience is the word with volunteers. Whatever anyone volunteers for, they should be commended and appreciated. And Adrian, I appreciate your thoughts. I hope we can use your energy to get some of your ideas working.

Jenny,

Looks great. We can put up a 'donors' page and list who donates with a link to their web site if they want it. As you may already know, many non profits acknowledge their sponsors. I think your letter is fine.

The current board members are listed on the RRDi website at this url >

http://irosacea.org/board/

You are welcome to ask the board members any question or make a suggestion here in this forum.

Hi everyone.    

Will the MAC members be participating within this forum at all?  Since this forum will be completely professional I don't see that as a problem.

Anyways .. glad to be here.

RHC

Mike,

Yes. There is a Ask the MAC... forum for this purpose. All the physicians and the PhD are very busy professionals but have agreed to answer some questions about rosacea research and what the corporate members want the RRDi to spend any funds on rosacea research. That is the whole concept of this corporation. Rosaceans are invited to have a say into what research should be done. The MAC can answer questions about what is practical or best since they all have experience in the field of research. We may not get these professionals to post hours and hours of posts, but they have agreed to spend a little time with the RRDi private forum. The Ask the MAC... forum is the place to post your questions. In time, we hope to hear from each member of the MAC.

Before anyone asks the MAC it would be a good idea to discuss in the ROSACEA RESEARCH forum with other corporate members what rosacea research the corporate members want. We can use the poll feature to vote on different suggestions. Then, once a concensus is reached we can move over to the ASK THE MAC forum with the results. We can take all the time we want discussing this subject in the ROSACEA RESEARCH forum and not waste the time of the MAC members until we have reached a concensus.

The MAC may enlighten us on what we want isn't really practical or some other information that we didn't know. The MAC will at least listen to us.

The charter says the MAC advises the Board of Directors on what rosacea research the RRDi should engage in. The Board of Directors makes the final decision. The corporate members have a vote on who serves on the Board of Directors. There is no other non profit organization for rosacea research that allows rosaceans a say into what research rosaceans may want. And all this has been done with volunteers.