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Thread: The hand writing is on the wall.....

  1. #1
    Senior Member Brady Barrows's Avatar
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    Default The hand writing is on the wall.....

    As everyone knows, 2020 has been one turbulent year, and 2021 doesn't look any brighter. The light at the end of this tunnel looks dim. So does the number of days the RRDi has left. The RRDi financial situation is grim and as I posted earlier about where all the rosaceans have gone and prefer social media rosacea groups, the RRDi is having to make the difficult decision to end our seventeen year attempt at helping rosacea sufferers because donations and support for our 501 c 3 non profit are simply not there. It was a good run and to me the saddest part is losing all the data on our website about rosacea. It will be gone. But you still have RF which is owned by David Pascoe who runs rosacea support. Thanks David for continuing RF and letting me post here all these years which was extremely gracious on your part. There is still a glimmer of activity here with a few active members left who care about RF.
    Last edited by Brady Barrows; 19th January 2021 at 03:51 AM.
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    Quote Originally Posted by Brady Barrows View Post
    As everyone knows, 2020 has been one turbulent year, and 2021 doesn't look any brighter. The light at the end of this tunnel looks dim. So does the number of days the RRDi has left. The RRDi financial situation is grim and as I posted earlier about where all the rosaceans have gone and prefer social media rosacea groups, the RRDi is having to make the difficult decision to end our seventeen year attempt at helping rosacea sufferers because donations and support for our 501 c 3 non profit are simply not there. It was a good run and to me the saddest part is losing all the data on our website about rosacea. It will be gone. But you still have RF which is owned by David Pascoe who runs rosacea support. Thanks David for continuing RF and letting me post here all these years which was extremely gracious on your part. There is still a glimmer of activity here with a few active members left who care about RF.
    I wonder what is the reason behind those people who leaving, is it beacause they give up or do they more often cure themselfs

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    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by RedMage View Post
    I wonder what is the reason behind those people who leaving, is it beacause they give up or do they more often cure themselfs
    My take on this is that they prefer the format in social media websites and are not familiar with nor appreciate the finer qualities of the 'forum' style format here at RF or the RRDi. I have been told that the RRDi forum is difficult to navigate. There has always been those even here at RF who once they figure out how to control their rosacea or are happy campers just stop posting. But those are far fewer in number than those who have left for rosacea social media groups that are discussed in the link and video that does an in depth investigation into this subject at this post. For example, the Reddit group r/rosacea has over 21K members. They love the Reddit format which is similar to Facebook. Personally I don't like the social media format of posting and how difficult it is to search for a subject, i.e., Soolantra, Ivermectin, ZZ cream. Try it yourself at Reddit or Facebook. Now try using the search box here at RF and note the difference. The data stored here at RF as well as the RRDi is categorized into pertinent subjects. There is absolute chaos or absolutely no categories in social media platforms regarding for example prescription or non prescription treatments, photo dynamic therapy, co-existing conditions. So the bottom line is the younger rosaceans prefer social media platforms.
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    There is a strenght in numbers. If others, as you said so many of them are going to social media cause is easier, more confortable to use for them then there is no sense to fight it. Making new group on Reddit its a good move, some players from RRDI and RF will definietely move there, but new players if they are right now looking for help, certainly in first search on Reddit will find and join group with more members.

    Hard to say but the Rosacea community is withdrawn from creation and development, just as it is withdrawn from social life by the disease that affects them.
    The few out there who want to change it and say some hard truths are bouncing off the wall of indifference.

    I can say that on my example but I think it also refers to many of the Rosaceans.

    They never achieved their dream job because it would require action. Action and the unknown brings stress, stress makes them turn red. At such moments, instead of acting, they may only think that they are burning, everything else ceases to count. They impose dozens of restrictions on themselves, do not eat this and that, at this and that time. Do not use this, dont do that, do not go outside, in the sun, do not go out with friends, do not arrange meetings. Keep contacts to a minimum, because every new person you meet is stressful, you don't know how they will react to your ailment. Look for excuses not to attend family reunions or other celebrations. Ultimately, you only feel comfortable in your home where no one can watch you.

    If they have a job, they are not satisfied with it, they usually do not stay after hours, they work exactly as much as they need to be able to finally free themselves at least for a bit. They do not earn incredible money in this case either, they have to pay for their life needs and some for themselves, and of course for new creams, lasers and drugs to fight their disease. It's better to spend it on some tangible dermatologist who probably had one chapter in a book about their disease during studies than a voice from the Internet.

    And the worst of all, they see 1001 different possible treatments, discovering new ones every day. Maybe it will work, and maybe this time, not but this time it is for sure, and when I combine this treatment with the treatment I did 2 years ago, theres no other choice. Is it. Maybe 2 more laser tretments or next 2 months on this drug and it all will be just a bad dream.

    Maybe some are so lucky. But for the rest of us its just serching for hope to survive another day. Without it I guess there would be less of us. They need Hope, they crave on it. It will be better it must be.

    Rather, it is up to the people who create these groups to decide whether they want to collaborate with the creators of other groups. If there are leaders who can pull the masses with them, there may be hope to organize it, raise funds, and sponsor new research.

  5. #5
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by RedMage View Post
    There is a strenght in numbers. If others, as you said so many of them are going to social media cause is easier, more confortable to use for them then there is no sense to fight it. Making new group on Reddit its a good move, some players from RRDI and RF will definietely move there, but new players if they are right now looking for help, certainly in first search on Reddit will find and join group with more members.

    Hard to say but the Rosacea community is withdrawn from creation and development, just as it is withdrawn from social life by the disease that affects them.
    The few out there who want to change it and say some hard truths are bouncing off the wall of indifference.

    I can say that on my example but I think it also refers to many of the Rosaceans.

    They never achieved their dream job because it would require action. Action and the unknown brings stress, stress makes them turn red. At such moments, instead of acting, they may only think that they are burning, everything else ceases to count. They impose dozens of restrictions on themselves, do not eat this and that, at this and that time. Do not use this, dont do that, do not go outside, in the sun, do not go out with friends, do not arrange meetings. Keep contacts to a minimum, because every new person you meet is stressful, you don't know how they will react to your ailment. Look for excuses not to attend family reunions or other celebrations. Ultimately, you only feel comfortable in your home where no one can watch you.

    If they have a job, they are not satisfied with it, they usually do not stay after hours, they work exactly as much as they need to be able to finally free themselves at least for a bit. They do not earn incredible money in this case either, they have to pay for their life needs and some for themselves, and of course for new creams, lasers and drugs to fight their disease. It's better to spend it on some tangible dermatologist who probably had one chapter in a book about their disease during studies than a voice from the Internet.

    And the worst of all, they see 1001 different possible treatments, discovering new ones every day. Maybe it will work, and maybe this time, not but this time it is for sure, and when I combine this treatment with the treatment I did 2 years ago, theres no other choice. Is it. Maybe 2 more laser tretments or next 2 months on this drug and it all will be just a bad dream.

    Maybe some are so lucky. But for the rest of us its just serching for hope to survive another day. Without it I guess there would be less of us. They need Hope, they crave on it. It will be better it must be.

    Rather, it is up to the people who create these groups to decide whether they want to collaborate with the creators of other groups. If there are leaders who can pull the masses with them, there may be hope to organize it, raise funds, and sponsor new research.
    Amen. You are preaching to the choir. The RRDi has all the social media accounts. Our Reddit account is r/rosacearesearch. Please join and post. I will make you a moderator! And if you want our Facebook account? Instagram?
    Brady Barrows
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    Very sad to hear this, does this mean the forum will close?

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    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by Rose&Jim View Post
    Very sad to hear this, does this mean the forum will close?
    You can look at our financial situation and see we may have enough funds to keep the RRDi going for two or three months. I can't keep the RRDi going by myself. If rosaceans prefer rosacea social media over a legal grassroots 501 c 3 non profit organization for rosacea patient advocacy, so be it. You will always have The Rosacea Forum, since David Pascoe owns it and pays the bills to keep it going. It is especially sad to me since I have been at this for over seventeen years.You can watch this video about the history of the RRDi.
    Last edited by Brady Barrows; 19th January 2021 at 03:57 AM.
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    Quote Originally Posted by Brady Barrows View Post
    Amen. You are preaching to the choir. The RRDi has all the social media accounts. Our Reddit account is r/rosacearesearch. Please join and post. I will make you a moderator! And if you want our Facebook account? Instagram?
    Why not. I d love to.

    You Brady are making wonderful job by gathering the knowledge and spreading the word.

    Maybe if we followed your example, the problem with Rosacea would already be solved.

  9. #9
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by RedMage View Post
    Why not. I d love to.
    You Brady are making wonderful job by gathering the knowledge and spreading the word.
    Maybe if we followed your example, the problem with Rosacea would already be solved.
    Wouldn't that be nice, if that were the case. 'Finding the Cure' is our mantra. Still haven't found it.

    So you will have to let me know when you join the RRDi who you are so I can make you a moderator at our Facebook or other social media accounts. Thanks for volunteering. You can use the RRDi contact form to reach me.
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    Quote Originally Posted by Brady Barrows View Post
    You can look at our financial situation and see we may have enough funds to keep the RRDi going for two or three months. I can't keep the RRDi going by myself. If rosaceans prefer rosacea social media over a legal grassroots 501 c 3 non profit organization for rosacea patient advocacy, so be it. You will always have The Rosacea Forum, since David Pascoe owns it and pays the bills to keep it going. It is especially sad to me since I have been at this for over seventeen years.
    so sorry to hear this

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