Final Appeal

[Guide]

Note: On October 21, 2023, due to a generous donation by one of our members, the RRDi has now opened up our website to the public so that our website, categorized into various rosacea subjects for rosacea research can be logically found. Only members can post. For over a year we closed out 95% of our website to the public and only members could view and read rosacea research. We rely on our members to keep this website going. Do you appreciate what has been accomplished here at the RRDi which is the only non profit for rosacea patient advoacy?  Join us and support us. 

Watch this video to understand the final appeal. After you have seen this video, join the RRDi with a subscription, log in and find the REPLY TO THIS TOPIC button or the QUOTE button (depending on your device, just keep scrolling till you find either button) to add your comment or question to this threaded post or any post on our website.  

If you want to keep your privacy, simply type in a cryptic display name so no one knows who you are and post (requires subscription). 

We started a subscription based member forum on February 10, 2022 asking for a dollar a month donation to keep our non profit organization for rosacea patient advocacy going. You can review a history of all the number of members who joined the RRDi month by month since 2006 by clicking on this link. We have had to change this to a minimum of $2/month since the PayPal fee is 51 cents which only leaves the RRDi with 49 cents (this makes PayPal doing better than the RRDi if we kept the one dollar a month subscription - if you only choose one month subscription it now costs $2 or you can choose the three month subscription for $3 which is only one dollar a month). You should try putting a 501 c 3 non profit rosacea patient advocacy grassroots organization together and see if you can get donations. It is like pulling teeth. Rosaceans simply don't want to unite together to do anything but rant in their favorite rosacea social media group for free and do absolutely nothing about uniting as a patient advocacy group to put pressure on medical research that rosaceans want to engage in. Try to get your rosacea social media group to unite on anything to do something that encourages rosacea research that rosaceans desire to be done. Well, this final appeal thread is a long one so keep scrolling below since there is more to learn. Why not join the discussion about the RRDi and whether you think it is a worthy endeavor and what insight you may have in keeping this non profit organization for rosacea patient advocacy going. If you don't want to volunteer, you could give us a dollar month with the three month subscription. 

If you have a comment, please find the REPLY TO THIS TOPIC button or the 'quote' button and hide yourself behind a cryptic display name and comment something or ask questions. 

 

[ak5790]

Hi, I have just come across this forum today (via the following page: https://rosacea-support.org/book-reviews#rosaceadiet) and became quite interested in the community. In terms of what the RRDI stands for today (this being patient-led and supported): the mission sounds great and quite admirable. As someone who is in my early 30's and got properly assessed and diagnosed with rosacea just back in 2017... I find the condition does not get nearly enough attention (especially considering that there is mild research that had taken place on important topics such as the possibility of a link between rosacea and autoimmune conditions: https://www.dermatologytimes.com/view/more-evidence-rosacea-autoimmune-link).

This being said, as a new member it seems there are two main things missing: lack of awareness of the organization and therefore, lack of engagement. The first issue might be solved by collaboration with other grass-roots groups in either adjacent / related conditions or another dermatological condition of high prominence (for example, atopic dermatitis has been quite popular in recent years). The vehicle for collaboration and engagement could be as simple as social media (posting of recent articles on either topic and soliciting feedback that way). 

Thanks again for keeping this community alive. It is impressive to learn that RRDI has been going on since 2004 and I hope it will remain so. This condition is truly under-represented but the last thing patients need is another big group (such as the aforementioned NRS and AARS) that simply unites 'thought leaders' (in this case, physicians with clout) and the pharmaceutical manufacturers.

[Guide]

5 hours ago, ak5790 said:

Hi, I have just come across this forum today (via the following page: https://rosacea-support.org/book-reviews#rosaceadiet) and became quite interested in the community. In terms of what the RRDI stands for today (this being patient-led and supported): the mission sounds great and quite admirable. As someone who is in my early 30's and got properly assessed and diagnosed with rosacea just back in 2017... I find the condition does not get nearly enough attention (especially considering that there is mild research that had taken place on important topics such as the possibility of a link between rosacea and autoimmune conditions: https://www.dermatologytimes.com/view/more-evidence-rosacea-autoimmune-link).

This being said, as a new member it seems there are two main things missing: lack of awareness of the organization and therefore, lack of engagement. The first issue might be solved by collaboration with other grass-roots groups in either adjacent / related conditions or another dermatological condition of high prominence (for example, atopic dermatitis has been quite popular in recent years). The vehicle for collaboration and engagement could be as simple as social media (posting of recent articles on either topic and soliciting feedback that way). 

Thanks again for keeping this community alive. It is impressive to learn that RRDI has been going on since 2004 and I hope it will remain so. This condition is truly under-represented but the last thing patients need is another big group (such as the aforementioned NRS and AARS) that simply unites 'thought leaders' (in this case, physicians with clout) and the pharmaceutical manufacturers.

Thanks for your insight into all this. Very few, as you have pointed out, are motivated to express any thought on this subject. The RRDi has social media accounts. Would you like to volunteer to moderate and manage one or more of them?  

[Guest Jennifer]

I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

[Apurva Tathe]

On 10/10/2021 at 9:22 AM, Guest Jennifer said:

I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

first you stop consuming alcohol completely and see the result after one month. I am not saying that alcohol is causing your rosacea getting worse but sometimes it happens that any trigger which causes flare-ups, if we consume them only once would immediately cause flare-ups. This is only to see whether alcohol is your trigger or not and please share your results. 

[Guide]

23 hours ago, Guest Jennifer said:

I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

If you have been diagnosed with Phenotype 5, it usually responds to treatment quite well. We have a list of treatment options to consider listed in this post which requires you join the RRDi as an active member to view. Have you been diagnosed with Phenotype 5? What 2 prescription treatments have you used?

[Guide]

On 10/10/2021 at 9:22 AM, Guest Jennifer said:

I have rosacea on my nose.  I have had it for 3 years, with little notice, but now it is getting really bad with bigger pores and bumps getting bigger and bigger on top and sides of my nose.  I have taken the  2 prescription medications recommended with poor results.  I have had it scraped 1 time 2 years ago but it did nothing.  I have alcohol a couple times a month.  Does anyone know what can slow down the process on the nose please?

We do have a post on alcohol and rosacea but you have to register and become a member to view the post. If you use our search box on the home page at the top and type in 'alcohol' you can read a list of posts on this subject which are numerous and you could search through them but again, you need to register an account and become a member to view most of these posts since guests are only allowed to view a small percentage of our rosacea data. 

Click here for a blurb about our post on alcohol and rosacea. 

[Guide]

Just an update on our financial situation. We were able to continue with Invision Community for our website, but this has depleted our  donations to just $152.86 at the end of March. Not sure if we can continue unless we get 100 active subscribers which would keep us going. Donations in 2022 including subscriptions totaled $357.94. Expenses in 2022 amounted to $415.82.  

We also need some active subscribers who post as well as any volunteers who would like to serve on the board of directors. Could you  post in this thread your thoughts on whether you think the RRDi should keep going or not?  In order to post in this thread you will need to join the RRDi. If you want to volunteer to serve on the board of directors please post why and what you would do to make the RRDi an active non profit organization for rosacea sufferers. 

This final appeal has been going on now since June 2021 and we scrapped by with just barely covering our expenses to keep this non profit organization going. It is estimated that in 2023 we will need at least $1K in donations to keep going. Subscriptions help but we simply don't have enough subscribers to meet our expenses. Here is a list of the major expenses: 

Invision Community website forum 
Registering our domains 
Apple Developer account (to be able to use Sign in with Apple 

If you want all the details of our financial situation, click here. 

[Guide]

On 8/28/2021 at 1:53 AM, ak5790 said:

Hi, I have just come across this forum today (via the following page: https://rosacea-support.org/book-reviews#rosaceadiet) and became quite interested in the community. In terms of what the RRDI stands for today (this being patient-led and supported): the mission sounds great and quite admirable. As someone who is in my early 30's and got properly assessed and diagnosed with rosacea just back in 2017... I find the condition does not get nearly enough attention (especially considering that there is mild research that had taken place on important topics such as the possibility of a link between rosacea and autoimmune conditions: https://www.dermatologytimes.com/view/more-evidence-rosacea-autoimmune-link).

This being said, as a new member it seems there are two main things missing: lack of awareness of the organization and therefore, lack of engagement. The first issue might be solved by collaboration with other grass-roots groups in either adjacent / related conditions or another dermatological condition of high prominence (for example, atopic dermatitis has been quite popular in recent years). The vehicle for collaboration and engagement could be as simple as social media (posting of recent articles on either topic and soliciting feedback that way). 

Thanks again for keeping this community alive. It is impressive to learn that RRDI has been going on since 2004 and I hope it will remain so. This condition is truly under-represented but the last thing patients need is another big group (such as the aforementioned NRS and AARS) that simply unites 'thought leaders' (in this case, physicians with clout) and the pharmaceutical manufacturers.

You are spot on with your comment. Just need someone like you to post some more and engage as a volunteer to implement your insight into all this. Change your membership status from inactive to active, which would be helpful. 

[Guide]

Why do you think not one of our members posts anymore?  We do have a few active subscribers and posts are just not happening. Could one of our subscribers please give an opinion why posts are not happening in our guest or member forum?  

We opted for the subscription service for our non profit organization since the only other options are to provided totally free information with or without advertisements. We cannot afford to give free rosacea information as we did for years since donations are not coming in. We prefer not to have advertisements on our website as a source of income to keep our non profit organization going. The website is are largest expense. 

If we don't get enough subscribers or donations, we will be closing down this non profit for rosacea which is the only patient advocacy, grassroots non profit for rosacea that is legally a 501 c 3 non profit organization recognized by the IRS and the states of Alabama and Hawai'i. 

Please consider giving your thoughtful post. 

[Guide]

Due to a generous donation we have opened up the website and most of the forums to guests who can now access free rosacea information. Subscribers (members) are allowed to post, guests can only view and read topics.