Just Venting

[Guide]

image courtesy of WikiMedia Commons

Just thought I would vent a little since, after all, I founded the RRDi, and no one hardly ever posts, even though there are over 1200+ members, and we know  that many are viewing the posts since we have counters showing the number of views, so we know that rosacea sufferers are learning about rosacea from our website. So I posted about this a while back, Where Have All the Rosaceans Gone?, back in February 2018, which did elicit one reply from RedMage, which is much appreciated, and has as of this date 96 views, so the odds are 1 in 96 that someone will reply to this post. So I have been posting some at Reddit and Facebook to see what is going on, and am appalled at the lack of basic rosacea knowledge, and I have been trying to educate rosaceans and, got a disparaging post from a Reddit poster who I had commended for some good investigative reporting on finding that Soolantra isn't really using Cetaphil as  its 'vehicle base' [1] and was told that "the Rosacea Research & Development Institute (RRDi) is a sham 'institute' operating from a PO Box that conducts no research or development, hasn't published a journal since 2010, and doesn't even publish its 990s like any reputable 501(c)(3) public charity would be expected to. You're not fooling anyone." That really made my day. Here I have devoted countless volunteer hours trying to make the RRDi a non profit rosacea patient advocacy organization and this certainly made me feel blue. It still boggles my mind that rosaceans continue to support and donate to the National Rosacea Society, which is the chief reason we formed the RRDi in 2004 (read this in case you haven't clue about this). Rosaceans actually prefer the NRS and how it spends its donations. Mind boggling to me. 

So just want you to know, that is the 96 that may view this post, that if some of you don't step up to the plate and start volunteering, posting and doing something as a member of the  RRDi that this non profit organization for rosacea may indeed have to close. Then all you got is the NRS, the AARS, and the ARSC. It really is up to you. And I don't mean up to others, I mean up to you. Oh, you will still have your Facebook and Reddit rosacea groups which is what most rosaceans prefer so you will be in good company. Is that really what you prefer?

Reply to this Topic

There is a reply to this topic button somewhere on the device you are reading this post. If you never heard about this topic and you learned about it here first, wouldn't it be a gracious act on your part to show your appreciation for this topic by registering with just your email address and show your appreciation with a post?  And if registering is too much to ask, could you post your appreciation for this topic by finding the START NEW TOPIC button in our guest forum where you don't have to register?  We know how many have viewed this topic because our forum software shows the number of views. However, most rosaceans don't engage or show their appreciation for our website and the RRDi would simply ask that you show your appreciation, please, simply by a post.  

End Notes

[1] See end note [3] in this post

[Apurva Tathe]

Hey Admin, It's completely nothing like that. Whenever I have anything to share and post, I always do. Today I found your post on fasting and I shared my experience with this post and was browsing something and I found NRS designated this month as rosacea month. SO I just shared that news in this forum and after posting that I found this post. I do not know about the donation and support to any organization, I only love to share and spread my knowledge.

[Guide]

Thanks Apurva Tathe for your posts. 

[Guide]

I just checked this post today, May 6, which has not been a month since I initially posted this vent I am still on, and there has been 68 views of this post totaled up today. So since Apurva Tathe is the only one who replied to this thread (just in case you don't know how to reply to this thread there is a green button at the top of the thread to the right - see below) I thought maybe some of you need some help understanding how a forum works with replying to a post?

Or you can scroll all the way to the bottom of the thread and you will see 'Reply to this topic' and just start typing (in both cases you need to be registered and logged in).

 

Anyway, I thought I would continue my vent. I have been browsing Reddit and Facebook to see where all the rosaceans have gone and have discovered that there are some huge rosacea groups formed and how these are extremely popular to use. For example, at Reddit r/rosacea has 7.9K members (I tried posting there and one of the moderators was extremely rude and would not reason with me and denigrated the RRDi repeatedly so I simply left this group). I joined Reddit r/SkincareAddition (954K members) and am appalled that anyone can try to sort through this group for help with rosacea since it covers so many different skin conditions. Facebook Rosacea (in English) has 6.6K members, while Rosacea Tips and Support Group has 7.4K members. Facebook to me has a friendlier atmosphere over Reddit (for example, I simply recommended that in one of the many inquiries, IS THIS ROSACEA?, to see a dermatologist I was chastised and rudely told to mind my own business). So far, in Facebook the rosaceans there are more respectful and kindlier than the Reddit rosaceans. The most appalling discovery in all this is the lack of rosacea knowledge. Most rosacea newbies, of course, haven't a clue what rosacea is, and the vast majority are trying to learn about it through Reddit or Facebook and the search feature at either one is dreadful. Of course, they don't know what to search for in the first place, but the most FAQs are, Is this Rosacea?, What Moisturizer?, Should I get Laser? (or LED or IPL, etc.), What is Horse Paste?, Asking about Rosacea Triggers, especially IS COFFEE A TRIGGER?, and usually asking about a particularly over the counter treatment for rosacea or a particular prescription treatment. As you can see, the RRDi has been answering these questions since 2004 and has grouped all these questions into logical categories and areas in the member forum or in the research articles. Why rosaceans prefer Facebook and Reddit over having all these questions in a forum in categories boggles my mind. What is it about Facebook and Reddit that appeals to these rosacea newbies?  It is so difficult to find what you are looking for in either one. Total chaos yet rosaceans love it. Your thoughts on all this?  

Second, is the fact that since the 1200 plus members of the RRDi simply don't want to volunteer and post or do anything that the RRDi funds are dwindling (and since our non profit is so transparent you can view the financial situation that the RRDi is in).

At the present rate of spending, we have enough to last a little over a year. I am hoping for a donation from Demodex Solutions, but Walter apparently hasn't had the success he used to have when the ZZ cream was one of the more popular demodectic rosacea treatment around (horse paste has taken over), so I can't count on his support. There simply isn't enough members purchasing our Amazon Affiliate items to keep the RRDi afloat.

There simply are no donations to speak of in the last few years. Members don't donate. If the 1200+ members each donated a dollar that would keep us going for over a year and half. 

Going through the hoops to get a Galderma Education Grant is a huge amount of volunteer time and I may try going through the hoops again but you should try it and see how difficult Galderma makes this process and they only offer the RRDi a $2K grant if you qualify. Would anyone of you want to volunteer to do this and keep half the money (the RRDi has to keep half to keep this ship afloat!!!). However, if you can get one of these education grants from Galderma through the RRDi you can keep half the money which means $1K in your pocket! We have been offering this for a long time and some volunteers have tried and given up rather quickly because you really have to be patient and meticulous to follow all the instructions from Galderma, not to mention the multiple forms and bureaucratic steps required to get the grant. All you do is contact me and I will set you on course on how to do this. 

So the handwriting is on the wall. The days of the RRDi are numbered since volunteering is just not popular anymore as it was in 2004 when the RRDi started. There are no Warren Stuarts or other helpful volunteers. The other board members are busy and involved with their own responsibilities to be able to volunteer very much at all. The MAC Members are the same. Actually the MAC Members are one of the Crown Jewels of the RRDi, however, I cannot really bother them since when I do some quit and want their name removed so I have learned to not bother them unless I have something pertinent to their speciality like asking them a question I know they know the answer. It is amazing they have offered to volunteer for the RRDi and give me their personal contact information and I can ask them rosacea questions. What a resource!  

Then there is the wealth of rosacea data on this website. Huge amount of rosacea data. All this will be gone unless we either (1) get volunteers to keep this going, (2) get some donations to keep this going, or, (3) you come up with another solution. 

This is not to mention why the RRDi was formed in the first place, which a lot of you rosacea newbies haven't a clue about. We do have a history of the RRDi if you are interested. So since I did mention this, yes, this is still a venting session for me, you may need to understand rosacea research and get a perspective on this. First read the post, Rosacea Research in Perspective of Funding and then read Rosacea Research in Perspective of Idiopathic Diseases. Do you really want the NRS and the AARS to keep the status quo rosacea research that the pharmaceutical companies keep funding?  Do you want a non profit organization for rosacea patient advocacy to fund some novel rosacea research? Unless you form another non profit organization for rosacea that is better than the RRDi, at this point, the RRDi is the only choice. So please consider what is in this entire thread, about what I just vented about and please post a comment in this thread. Do you have any thoughts on this? 

 

 

[Guide]

Just an update on my venting in this thread, which started on April 8, 2019 (264 days this thread has been up and running) which now has 299 views as of this date (December 28, 2019). I have moved to Alabama and have begun going through the process of registering the RRDi in Alabama which is odd, because I recall one of the members of the board of directors for the Rosacea Research Foundation was a veterinarian living in Alabama. Very few rosaceans will recall all those events back in 2004 when two non profit organizations went in two separate directions. The RRF dissolved but David Pascoe still maintains its website and has now removed the names of those who served on the board of directors. 

So I put out a request for any member of the RRDi who lives in Alabama to come forward and volunteer to sit on the board of directors and Johannes Schild has filled that spot so that we have two members on the board who are residents of Alabama. We could also continue to be registered in Hawaii if any RRDi member would volunteer to do that, but since volunteering is usually something that our RRDi members shy away from, I doubt if that would ever happen. I personally knew a friend in Hawaii who has rosacea and asked her to do that but she told me she was also leaving Hawaii next year and couldn't volunteer. So if anyone wants to keep the RRDi registered in Hawaii it would be good to contact me asap. 

So this thread has had an average of just a little over 1 view a day since I initially posted my vent. Not too many care about reading my vent, and at least Apurva has replied to this thread (and I am happy for almost 300 views). However, I will continue my vent. Could one of you who reads this thread explain to me why you think hardly any of the RRDi members don't want to post in the public forum?  Why would 1200 plus members join the RRDi and then NEVER post? What is going on? 

I thought since Facebook and Reddit were PRIVATE (social media groups for rosacea) and for some reason rosaceans prefer to be in private groups, the RRDi has sponsored a private rosaceans group but that has NOT been popular at all. We are spending $10/month to do this and it sure hasn't been used at all. I was thinking about making the public member forum we use through Invision Community into a PRIVATE forum. What are your thoughts about this?  

The RRDi does have Facebook and Reddit groups but that hasn't proved popular at all. What are your thoughts about all this? Why the lack of posting by RRDi members?

[Apurva Tathe]

Yes the reason is, having read all the threads and posts in the RRDi forum, they justify themselves with a pretty good amount of knowledge gained. but in my opinion I would also suggest all the rosaceans to come out and share your knowledge and problems with us and ask your questions so that we could help you out or either we could get something new out of this because every rosacean has different experiences and different outcomes with respect to their rosacea.

Brady and I are gaining interest in viruses in rosacea so if any member has any experience of it, they can just share their experiences or problems or questions with us.

[Antonia Turner]

Thank you any help would be appreciated.

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