Guests Guest Jenny Posted June 29, 2006 Guests Report Share Posted June 29, 2006 I have chatted with Adrian (and Brady) via e-mail about the possibility of creating an information brochure on Rosacea via the RRDi. One of our 'silent' volunteers has agreed to design the brochure for us. I so love this volunteer spirit! Does anyone have any input/wording/ideas that should be included in the brochure? I will e-mail wording and ideas, mostly from this web site, to the designer. It would be nice to think that this will be a team effort though! Any input would be appreciated. Jenny Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted June 30, 2006 Guests Report Share Posted June 30, 2006 I have just posted this in the Rosacea Forum and thought it best to post it here too, at the source of where the brochure is being initiated from. http://forum.rosaceagroup.org/viewtopic.php?t=3777 Ok, don't all yell at me at once! Please! I am in the process of putting together an info brochure on Rosacea via the RRDi. This will be a team effort and my part is to start the ball rolling. What I need is photos. I know, I know! Who wants their ugly mug shot put in a brochure? Urgh! But hey, if it helps to educate doctors and those who have no idea about Rosacea, including those who have Rosacea and don't know it, then it will be an accomplishment! Gawd, I wish there was a brochure floating around my docs office years ago! Would have saved me a huge amount of grief! I have just e-mailed my Uncle to ask if I can get a photo from him. He has Rhinophyma. Anyway, please e-mail or PM me if you are willing to contribute to this project with a photo. Jen Link to comment Share on other sites More sharing options...
Steve95301 Posted July 3, 2006 Report Share Posted July 3, 2006 Brilliant idea. It's the perfect thing for the casual person surfing through. As they read, they realize they have a cousin with a condition like this, or a brother, or a co-worker, etc. (But it must have pictures... and conversations. But seriously, pictures.) I can do some editing... (mad grammar skills!) Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted July 9, 2006 Guests Report Share Posted July 9, 2006 Ok, let me say this has been a lot more difficult than I had originally envisaged! However, here is the first dratf (and NEEDS work!!!): What is Rosacea? Rosacea is a chronic and progressive disorder of the face, characterized by some or all of the following symptoms: ¬? Extremely sensitive facial skin ¬? Blushing ¬? Flushing ¬? Permanent redness ¬? Burning ¬? Stinging ¬? Swelling ¬? Papules and pustules ¬? Broken red capillary veins ¬? Red gritty eyes (which can lead to visual disturbances) ¬? A disfiguring bulbous nose Men and women of all ages can be affected, with a staggering 45 million sufferers of Rosacea worldwide. Confusion - Misconceptions ¬? Rosacea can be confused or co-exist with Acne Vulgaris and/or Seborrheic Dermatitis, amongst other similar presenting disorders ¬? The standard treatments can easily be treated by standard medications ¬? Avoiding triggers is only a minor nuisance ¬? Rosacea is a cosmetic disorder ¬? Rosacea is simply just a red face Daily Battle Keeping the Rosacea beast under control is a daily battle for many who suffer from Rosacea. Avoiding triggers that can set off a flare, avoiding social occasions and feeling alone. Rosacea can also cause anxiety and/or depression, have a negative impact on relationships, work performance and overall quality of life. About the RRDi The Rosacea Research & Development Institute (RRDi) is the first 501 © (3) Non Profit Corporation, established June 7, 2004 in the State of Hawaii, USA for the purpose of researching Rosacea. Established by volunteer Rosaceans for Rosaceans, which is the force that drives the organization and is the integral spirit of the RRDi philosophy. What will be researched? The RRDi are pleased to have a steadily growing Medical Advisory Committee (MAC). The purpose of the MAC is to determine what research needs to be addressed, to recommend how the institute spends the funding, and to determine the general direction of the institute. The MAC will listen to recommendations of the corporate members of the RRDi, the majority of these corporate members will be Rosaceans. Our list of MAC members can be located here www.irosacea.org/mac.php Visit Us On-Line www.irosacea.org Here you can: ¬? Learn more about the RRDi ¬? Join the RRDi and make a difference ¬? Apply for a Grant for research on Rosacea ¬? Donate securely You can also send your donation by check (in US Dollars), made out to: Rosacea Research and Development Institute PO Box 234 Pandora Ohio USA 45877 Board of Directors All of the Board members are volunteer Rosaceans who are available to answer your questions or listen to your concerns in the private forum for corporate members. We are an international team. Brady Barrows - Director (Hawaii) Warren Stuart - Assistant Director (New Zealand) Pam Tobey - Secretary (USA) Cathy Rupert - Treasurer (USA) Valerie Fox - Board Member (USA) Jenny Nairn ‚Äì Bookkeeper; Chairman of the Funding Committee (Australia) Steve Andreessen - Webmaster (USA) www.irosacea.org - Idea is to put the web address at the base of each page of the fold over flyer (A4 folded into 3, back and front). ----- The formatting doesn't transpire to this Forum but basically it is the wording I want feedback on. I still want some more ideas of a motto/logo, please see this thread: http://www.members.irosacea.org/viewtopic.php?t=36 I thought, also from an e-mail suggestion from Brady, that we could simply have the front cover titled "Do you have Rosacea?". Perhaps even "What is Rosacea?". A photo on the front would be good too. I'm still working on gathering photos. But would be good to have another bold quote at the bottom of the info brochure. Something like 'Beat the Rosacea beast!' but I don't like that one. If we had an RRDi motto/slogan in the brochure, that was very obvious to even the non Rosacean, we could use that. I'm usually quite creative in these things but with my 2 young boys I find my creativity is currently on how to make a pirate ship from big boxes or how to turn the lounge room into a cubby house! LOL My time is usually late at night and then I am tired and not as inpired/creative. Anyway, please...feed back! Jenny Link to comment Share on other sites More sharing options...
supdawg234 Posted July 9, 2006 Report Share Posted July 9, 2006 I think you have done a really good job with it and I agree with Brady on suggestion for the cover idea. I think this could really raise awareness and get things moving. Link to comment Share on other sites More sharing options...
Steve95301 Posted July 11, 2006 Report Share Posted July 11, 2006 I think it's very concise and well done, I can't think of anything to add. I'll try to come up with some slogans to toss into the brainstorm. Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted July 11, 2006 Guests Report Share Posted July 11, 2006 Ah, I've been playing around with it a bit. Will up-date soon when I think it is closer to final wording. I'm way too pedantic when it comes to these sorts of things! Jenny Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted July 19, 2006 Guests Report Share Posted July 19, 2006 Ok, I'm still not sure if the wording flows well but here is what I have so far. I've been sitting on it for a while as I think there needs to be more in it and I also need more photos. Can anyone help? I‚Äôm thinking first off, just a straight page with info that can be linked to the RRDi web site. Also, an A4 page back and front, 3-fold that can be printed into a brochure with the front page stating: What is Rosacea? (photo). Wording: What is Rosacea? Rosacea is a chronic and progressive disorder of the face, characterized by some or all of the following symptoms: ¬? Extremely sensitive facial skin ¬? Blushing ¬? Flushing ¬? Permanent redness ¬? Burning ¬? Stinging ¬? Swelling ¬? Papules and pustules ¬? Broken red capillary veins ¬? Red gritty eyes (which can lead to visual disturbances) ¬? Advanced cases may develop a disfiguring bulbous nose Men and women of all ages can be affected, with a staggering 45 million sufferers of Rosacea worldwide. Confusion Rosacea can be confused or co-exist with Acne Vulgaris and/or Seborrheic Dermatitis, amongst other similar presenting disorders. Misconceptions ¬? Rosacea can easily be treated by standard medications along with topical gels/lotions/creams ¬? Avoiding triggers is only a minor nuisance ¬? Rosacea is a cosmetic disorder ¬? Rosacea is simply just a red face Daily Battle Keeping the Rosacea beast under control is a daily battle for many who suffer. Avoiding triggers is not so easy. Avoiding social occasions and feeling alone is common. Rosacea can cause anxiety and/or depression, have a negative impact on relationships, work performance and overall quality of life. Want to Learn More From Other Rosacea Sufferers? There are two main public discussion groups online where you can discuss day-to-day issues about Rosacea: Rosacea Forum: www.forum.rosaceagroup.org Rosacea Support Group: www.groups.yahoo.com/group/rosacea-support Both of these groups have a great deal of information to offer as well as general support on how to deal with the daily battle of Rosacea. About the RRDi The Rosacea Research & Development Institute (RRDi) is the first 501 © (3) Non Profit Corporation, established June 7, 2004 in the State of Hawaii, USA for the purpose of researching the cause of and potential cure for Rosacea. Established by volunteer Rosaceans for Rosaceans, this is the force that drives the organization and is the integral spirit of the RRDi philosophy. What will be researched? The RRDi are pleased to have a steadily growing Medical Advisory Committee (MAC). The purpose of the MAC is to determine what research needs to be addressed, to recommend how the institute spends the funding, and to determine the general direction of the institute. The MAC will listen to recommendations of the corporate members of the RRDi. The majority of these corporate members will be Rosaceans. Our list of MAC members can be located here www.irosacea.org/mac.php Visit the RRDi On-Line www.irosacea.org Here you can: ¬? Learn more about the RRDi ¬? Join the RRDi and make a difference ¬? Apply for a Grant for research on Rosacea ¬? Donate securely You can also send your donation by check (in US Dollars), made out to: Rosacea Research and Development Institute PO Box 234 Pandora Ohio USA 45877 RRDi Board of Directors The Board of Directors are an international team of volunteers who all suffer from Rosacea. Here‚Äôs our team! Brady Barrows - Director (Hawaii) Warren Stuart - Assistant Director (New Zealand) Pam Tobey - Secretary (USA) Cathy Rupert - Treasurer (USA) Valerie Fox (USA) Jenny Nairn ‚Äì Bookkeeper; Chairman of the Funding Committee (Australia) Steve Andreessen - Webmaster (USA) www.irosacea.org 2006 ----- Yes, I haven't changed a lot but I did take out the part about chatting with the Board in the RRDi Forum as this Forum is more about discussing research and RRDi issues, such as this info brochure. I also added in the two public discussion groups as a reference. Please, feedback! I so want to send this on to our volunteer graphic designer but I am not sure that everything is in there that should or could be said. Also, if you know of anyone with a photo that can be used, please e-mail me funding@iroseacea.org Thanks so much Jenny Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted July 21, 2006 Guests Report Share Posted July 21, 2006 Ok, I've e-mailed the draft wording to our volunteer graphic designer. I don't have the photos together yet but I hope it will be possible to start the ball rolling with just the wording. Again, all feedback is welcome! Jenny Link to comment Share on other sites More sharing options...
Inactive Voting Member Joanne Whitehead, PhD Posted July 22, 2006 Inactive Voting Member Report Share Posted July 22, 2006 The brochure text sounds great to me, nice work! For donations, why not set up a paypal account? It's so easy to give money when it's just a couple of clicks of the mouse, and currency exchange will not be an issue. It's a free service for the donor, and almost free for the recipient. Are you still in need of photos? I could try dig up a picture of my asymmetric rosacea - it often affected only one side of my face at a time! Joanne Link to comment Share on other sites More sharing options...
Root Admin Guide Posted July 23, 2006 Root Admin Report Share Posted July 23, 2006 We have been accepting paypal since 2004. The brochure text sounds great to me, nice work! For donations, why not set up a paypal account? It's so easy to give money when it's just a couple of clicks of the mouse, and currency exchange will not be an issue. It's a free service for the donor, and almost free for the recipient. Are you still in need of photos? I could try dig up a picture of my asymmetric rosacea - it often affected only one side of my face at a time! Joanne Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted July 23, 2006 Guests Report Share Posted July 23, 2006 Hi Joanne Yes, I'm still looking for photos. Would be great if you could e-mail me what you have to funding@irosacea.org Thanks so much Jenny Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted July 23, 2006 Guests Report Share Posted July 23, 2006 Take 3! I asked for help from a fellow Rosacean with a good grasp of the English language and have taken those suggestions on board. Here was the feedback: "Hi Jen I like it. Three main points you might want to consider: i) Perhaps you presuppose too much awareness on the part of the reader. -You and I know what a 'trigger' is but many others (non internet using rosaceans included) will probably not. - Where you set down the misconceptions you might want to provide the corrective too. So eg : 'Rosacea is simply a cosmetic problem. Wrong. Neurpathic rosacea is physically painful. Ocular rosacea can result in blindness etc etc ii) I guess the RDDi and other rosacea organisations exist because there is no cure and because many doctors are clueless. It would be nice to say this last bit in your brochure but if it is destined for doctor's surgeries that might be a bit awkward! BTW you touch upon the inadequacy of the approach of most GPs, when among other things you say that avoiding triggers is a nuisance. I would be temtped to go further. To avoid all triggers means to stop life for many. Or something. iii) I would be tempted to underline the psychological/career damage that rosacea can do. But I do see this as difficult territory because if you lay it on too thick some might begin to question whether the disease is psychsomatic etc Using your framework and ideas I've knocked up a variation with (some of) the above thoughts in mind. I've made a few changes to words etc but these are only personal preference. I hope you find some bits of it useful. Cheers" Here is the FINAL wording...I hope: What is Rosacea? Rosacea is a chronic and progressive disorder of the face, characterized by some or all of the following symptoms: ¬? Extremely sensitive facial skin ¬? Blushing ¬? Flushing ¬? Permanent redness ¬? Burning ¬? Stinging ¬? Swelling ¬? Papules and pustules ¬? Broken red capillary veins ¬? Red gritty eyes (which can lead to visual disturbances) ¬? Advanced cases may develop a disfiguring bulbous nose Men and women of all ages can be affected and countless millions throughout the world suffer from it. Rosacea is sometimes difficult to diagnose and it can co-exist with other disorders like Seborrheic Dermatitis and Acne Vulgaris. Its exact cause is unknown. There is no cure. Daily Battle Those who live with Rosacea fight a daily battle with the disorder. Many apparently trivial things ‚Äì a hot coffee, alcohol, a shower, a centrally heated home or office, a little sunlight, a large meal ‚Äì can trigger a marked deterioration in the sufferer‚Äôs symptoms. The struggle to avoid triggers and the damage the disorder does to the appearance cause many Rosaceans to become depressed and anxious. Relationships suffer. Careers suffer. Some become socially isolated. A number, suicidal. Misconceptions ¬? Rosacea can easily be treated by standard medications along with topical creams. Wrong! Many current treatments help only one aspect of the disorder while aggravating other aspects. ¬? Rosacea is a cosmetic disorder. Wrong! The flushing and burning of the face can be physically painful. Rosacea, in severe cases can cause blindness. ¬? Telling sufferers to avoid all triggers is appropriate advice. Wrong! For many Rosaceans this would mean avoiding all of life‚Äôs pleasures. ¬? Rosacea is simply just a red face. Wrong! Want to Learn More From Other Rosacea Sufferers? There are two main public discussion groups online where you can discuss day-to-day issues about Rosacea: Rosacea Forum: www.forum.rosaceagroup.org Rosacea Support Group: www.groups.yahoo.com/group/rosacea-support Both of these groups provide a great deal of information, support and advice on how to cope. About the RRDi The Rosacea Research & Development Institute (RRDi) is the first 501 © (3) Non Profit Corporation, established June 7, 2004 in the State of Hawaii, USA for the purpose of researching the cause of and the potential cure for Rosacea. Established by volunteer Rosaceans for Rosaceans, the spirit of communal self-help is central to the RRDi‚Äôs guiding philosophy. What Will be Researched? The RRDi is pleased to have a steadily growing Medical Advisory Committee (MAC) consisting of a number of globally respected medical experts. The role of the MAC is to determine the general direction of the institute and to allocate resources to those areas of research that offer most promise. The MAC will listen to the recommendations of RRDi corporate members. The majority of these corporate members will be Rosaceans. Our list of MAC members can be located here: www.irosacea.org/mac.php Visit the RRDi On-Line www.irosacea.org Here you can: ¬? Learn more about the RRDi ¬? Join the RRDi and make a difference ¬? Apply for a Grant for research on Rosacea ¬? Donate securely You can also send your donation by check (in US Dollars), made out to: Rosacea Research and Development Institute PO Box 234 Pandora Ohio USA 45877 RRDi Board of Directors The Board of Directors are an international team of volunteers who all suffer from Rosacea. Here‚Äôs our team: Brady Barrows - Director (Hawaii) Warren Stuart - Assistant Director (New Zealand) Pam Tobey - Secretary (USA) Cathy Rupert - Treasurer (USA) Valerie Fox (USA) Jenny Nairn ‚Äì Book Keeper; Chairman of the Funding Committee (Australia) Steve Andreessen - Webmaster (USA) www.irosacea.org 2006 ----- Any comments on the wording? I think it is set out a little better, reads well and is targeted at both Rosaceans and non-Rosaceans. Jenny Link to comment Share on other sites More sharing options...
Root Admin Guide Posted July 25, 2006 Root Admin Report Share Posted July 25, 2006 Jen, I think the brochure is fine but noted one thing we need to get permission on. Mentioning David Pascoe's r-s would be inappropriate unless we get permission from David first. David has expressed his support for the NRS and may object to having r-s mentioned in our brochure. Run this by David before we publish to get permission. We haven't had much support at all from David or the r-s group. Warren's group is officially tied in with the RRDi and that is a good idea to mention. We have no official connection to David's group. I have over 1000 members in my two yahoo groups but I don't want to have this connected to the RRDi since I think that would be inappropriate. And we should also run this by the board of directors to have r-s be officially connected to the RRDi if David Pascoe gives us permission to do this. We need the board's approval as well. I think that we should discuss this matter in the private board 'room' at the botttom of the members' forum. Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted August 11, 2006 Guests Report Share Posted August 11, 2006 Permission has been sought from David Pascoe and the RRDI Board for the use of the Yahoo Rosacea Support Group link to be used, green light given. Dr Wedrychowski also e-mailed me with some very sound advice on wording for the brochure and I will spend some time looking over the words again. I will put the final version here and in the MAC area before it is published. I do still need a photo of Ocular Rosacea and Rhinophyma - can anyone help? Thanks Jenny Link to comment Share on other sites More sharing options...
Root Admin Guide Posted August 17, 2006 Root Admin Report Share Posted August 17, 2006 Ask Dr. Tseng, Dr. Cremers, or Dr. Latkany. Link to comment Share on other sites More sharing options...
Guests Guest Jenny Posted August 17, 2006 Guests Report Share Posted August 17, 2006 Ah yes, thank you Brady. I shall ask them. Jenny Link to comment Share on other sites More sharing options...
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