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Guide

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Posts posted by Guide

  1. 'Two videos shared hundreds of times on Facebook feature a Kenyan doctor alleging that two drugs -- ivermectin on its own and hydroxychloroquine in combination with zinc and azithromycin -- are effective in treating Covid-19. But the claims are false: there is no scientific evidence that either medication can help treat the disease caused by the novel coronavirus. "

    Ivermectin and hydroxychloroquine are not proven Covid-19 treatments, James Okong'o, AFP South Africa, AFP FactCheck 

  2. mediawikiLOGO.png

    Several years ago I experimented with MediaWiki for a couple of websites when I was an active webmaster back in the day. I really loved the format and how Wiki works and continue to love Wikipedia as my go to source for learning. 

    David Pascoe, who owns RS has used a Wiki for his site for sometime now but there aren't current contributors. However, you get the idea of what David did with his Wiki when it comes to rosacea and is an example of what I am discussing. 

    There are some pluses and minuses when it comes to using a Wiki, which is discussed on this official page at MediaWiki

    The RRDi could sponsor a Wiki if there were enough volunteers to handle it. Anyone interested in this should find the reply button and discuss. This would require volunteers with some commitment. Reply to the topic if you are interested. 

    wikimedia.png

  3. On 3/23/2021 at 10:07 PM, Rob said:

    Try Cetaphil Baby Wash & Shampoo with Organic Calendula.  Calendula is a traditional treatment for blepharitis symptoms.  It took 4 weeks of gentle wiping in the shower for conditions to improve, something that antibiotic/steroid drops could not do over 2 years.

    Thanks Rob for the tip. It may help others who are searching for a solution. 

    By the way, you are the winner of a free jar of the ZZ cream for the month of March. You were contacted and didn't respond so we have no way of knowing where to ship the ZZ cream to you. At least you are recognized as the best poster in March. Congratulations!

  4. apple-signinbutton-560.JPEG

    The RRDi is pleased to announce that new members can sign in with Apple. This is an incredibly cool way to join our community and remain totally anonymous!  Plus is it so easy and secure! If you are not aware about Sign in with Apple read this page

    If you need support from Apple it is just a click away!

    Of course, our support volunteers are here to help if you need assistance

    If you choose, you can hide your email address and your identity when joining our community since Apple continues to make your privacy secure and the RRDi respects your privacy with our solid privacy policy. Our volunteer staff will not know who you are or your email address if you choose this setting that Sign in with Apple allows. 

  5. "Treatment with oxymetazoline as adjunctive therapy with energy‐based therapy was safe, well tolerated, and reduced facial erythema in patients with moderate to severe persistent facial erythema associated with rosacea."

    Lasers Surg Med. 2021 Jan; 53(1): 55–65.
    Oxymetazoline and Energy‐Based Therapy in Patients with Rosacea: Evaluation of the Safety and Tolerability in an Open‐Label, Interventional Study
    Emil A. Tanghetti, MD, David J. Goldberg, MD, JD,  Jeffrey S. Dover, MD, FRCPC,  Roy G. Geronemus, MD,  Zane Bai,  Nancy Alvandi, Stuart D. Shanler, MD, FAAD, FACMS 

  6. 5853936847adb_61uTL3FurL._SX522_.jpg.52b

    A "study evaluated the efficacy and safety of dual-frequency ultrasound with impulse mode, for improving skin hydration and erythema in Asian subjects with rosacea and acne" published in the Journal of Clinical Medicine and the results state that "dual-frequency ultrasound with impulse mode appears to be effective and safe for improving skin hydration and erythema in patients with rosacea and acne." [1]

    We hope to hear more about this treatment. If you have used this treatment, please volunteer and post your experience in this thread by finding the REPLY TO THIS TOPIC button. 

    Does anyone find it odd that we haven't heard hardly any anecdotal reports of rosaceans discussing ultrasound for rosacea? If the clinical papers are correct that a dual frequency ultrasound improves phenotype 2 or phenotype 3, you would think we would have heard more about it by now. There was a short thread discussing it in 2015 at RF that dismissed the treatment. Sull asked this same question in 2014 at RF and no one responded. It must simply not be an effective treatment since if it was we certainly would have heard more by now. The above recent clinical paper on this subject using it in Asia stimulated me to ask what any of you may think about this subject?

    Dr. Bowe who volunteers on the RRDi MAC recommends using the Truth Vitality Lux Renew and states on her website, "I also recommend it to my patients for use in between our appointments to maximize their results from in-office procedures! It can complement procedures for tightening (Ultherapy, Thermage), redness (V-beam) or acne (Peels and Theraclear), allowing you to get more out of each treatment and extending the results so you can space those treatments farther apart."

    Etcetera 

    Dual-Frequency Ultrasound as a New Treatment Modality for Refractory Rosacea: A Retrospective Study.

    Safety and Effectiveness of Microfocused Ultrasound  for Treating Erythematotelangiectatic Rosacea

    Color Doppler Ultrasound  Evaluation of Management of Papulopustular Rosacea

    Microfocused Ultrasound

    Microfocused Ultrasound with Visualization (MFU-V) for rosacea

    Investigation of thyroid blood tests and thyroid ultrasound findings of patients with rosacea.

    Ulthera® System for Treatment of Subtype 1

    Ultrasound accelerates skin healing, especially for diabetics and the elderly

    Safety of microfocused ultrasound with visualization in darker skin types

    End Notes

    [1] J Clin Med. 2021 Feb 18;10(4):834.  doi: 10.3390/jcm10040834.
    The Efficacy and Safety of Dual-Frequency Ultrasound for Improving Skin Hydration and Erythema in Patients with Rosacea and Acne
    Young Jae Kim, Ik Jun Moon, Hae Woong Lee, Chong Hyun Won, Sung Eun Chang, Mi Woo Lee, Jee Ho Choi, Woo Jin Lee 

  7. active-member150.pnginactivity.jpg

    The RRDi is now showing the active members vs the inactive members in member's profiles, since the non voting and the voting members haven't been engaging in any rosacea discussion for some time now.

    All you do is login to your account. Look at your account profile and it shows whether you are active or inactive. If you haven't posted in the last 30 days you are automatically placed in the inactive member group. Just post in any area open to guests and you automatically become active again and have access to the member area

    Because of a relatively inactive forum 'engagement' with fellow rosaceans which is really core to our mission (view the RRDi Mission) we have attempted to encourage members to post. Members, you are our only hope! Post! Read our mission goal below: 

    Goal #7: To allow volunteer members to have a platform to voice their concerns about rosacea and to contribute information about rosacea. Our goal is 10K members. 

    Since the vast majority of our 1.5K members are not engaging in any discussion, we inform everyone whether a member is active or inactive. 

    The definition of an active member is one who posts a minimum of at least one post a month. If after one month a member does not post the member status is inactive. This means that access will be visible to what a 'guest' user will be able to see. A member who is inactive may still post in the areas guests are allowed to view and automatically becomes an active member again, if the member posts again.  

    Active members will be able to view more content on our website about rosacea for thirty days and can enjoy the content (MEMBER FORUM). If they want to continue to view the content they must at the minimum continue with at least one post in the thirty day period, hopefully with some meaningful contribution to their fellow rosaceans who have joined the community, contributing to our Goal #7 mentioned above. 

    Ask not what rosaceans can do for you, but what can you do for rosaceans? Rosaceans Helping Rosaceans

    INACTIVE MEMBER Steps to Become Active
    If you are a current non voting or voting member and not able to view certain parts of our website for content simply post something about rosacea or what you are using to treat your rosacea to become ACTIVE again.

    (1) Login to your account. Post in any area of the website that Guests are allowed to view and post. Find the reply to top button or the start new topic button and post. Posting makes you active. 

    If you have forgotten your login credentials use our contact form and give us your email address you used to register your account and we will help you gain back your access. 

    We will be happy to restore your active status once you have posted which gives you thirty days to view the rosacea forums for rosacea content. To continue as an active member requires you post at least one post a month which shows you are active and that encourages your fellow rosaceans to also be active since you are setting an example. 

    (2) Another way to become active is donate one dollar. That surely shows activity and we will happily change your status to an active member for thirty days. However, we need to know that you are an inactive member and that you donated a dollar to change your status since the change has to be done manually. Contact us

    Inactive Members Can Still Post!
    How can inactive members post and become an active member again?  Simple. Find an area you would like to post something, For example, any area still open to guests that allow you to START A NEW TOPIC or QUOTE button. Just be sure you are logged into your RRDi member account. Post. That makes you active again!

    Another area you can post is the Guest Forum. Be sure to be logged into your account so the post counts toward your activity with your account.  

    If you are having issues logging into your RRDi member account use the contact form and explain your issue. Be sure to include your email address so we can resolve your login issue for you, if you want a resolution. 

    New Members
    If you are a new member you will remain as ACTIVE automatically for thirty days. If you post at least one post you will automatically be given an additional 30 days, actually from the date of your post. So let's say you post on the day you joined. The post count starts then. If you post on the 29th day after you joined, you will then get 30 more days as an active member.  

    If you simply join the RRDi and never post you are basically a guest who roams our site consuming our rosacea data and not engaging, basically what we refer to as a 'lurker.'  As long as you remain a lurker (inactive member) and not post within 30 days you will be inactive and be switched to an inactive member with guest privileges which allows you to post in areas of our forum still accessible to you. 

    We are trying to encourage engagement. Rosaceans helping Rosaceans.  

  8. Investigative Report on Why Rosaceans Prefer Social Media

    socialmedia7.png

    This post is about rosacea and social media platforms where all the rosaceans have gone and is an in-depth deep dive into this subject. Before we look at some of the data on this it would be good to go back in time and look at the history of the internet and rosacea, before the advent of social media.  

    Sixteen years ago when the RRDi was founded by rosacea sufferers with the motive to form a grassroots patient advocacy group that could have a united voice to the medical community who at that time didn’t take any rosacea patient advocacy group for rosacea seriously because none existed. Does the medical community take seriously a united effort from any social media platform group on rosacea that is a grassroots patient advocacy group?  I will let you think about that question. 

    There were two such organizations formed in 2004, one by David Pascoe (and others) and the other, the RRDi which involved myself (and others) who split into two camps. David Pascoe opted to using an html website for his non profit organization for rosacea and we opted for the Invision Power Board platform. David’s non profit, the Rosacea Research Foundation, was a similar grassroots organization that was more popular, raising $16K in a very short time and then quickly disbanded by the end of 2005, donating the entire money raised to the NRS, which was ironic, since both the RRDi and the RRF were formed because rosaceans wanted their own grassroots organization and were not happy with the NRS and its organization, how it was spending its donations, mostly on private contractors owned by one of the NRS board members, and very little on rosacea research.  But the glimmer of hope is that the RRF shows what can be done with a grassroots patient advocacy non profit organization. 

    RRF-Cheque1.jpgRRF-Cheque2.jpg

    The RRDi software platform was Invision Power Board which evolved into the Invision Community.

    IP>IPS>IC.png

    The forum platform software was extremely popular back in 2004 and is still used today by many organizations and companies

    forumsoftware.png

    The RRDi eventually hosted the entire website and forum on Invision Community servers. The RRDi continued to grow with members (1.3K in 2020) and small donations and over the course of almost seventeen years we have received around $15.5K which is around $900/year in donations. We did spend about $6K on education grants sponsored by Galderma and the rest spent to keep the website going and legally continue as a non profit with registration fees and published one edition of our print on demand journal. It does cost money to keep a non profit organization going, even if no one is receiving a salary, no employees and no payments to private contractors owned by one of the board members. We don’t do that. Everyone is a volunteer. Pro bono. 

    Then over the years the members and posts have dropped to nearly zero. We know we have traffic to our website because Google Analytics shows we do, nearly 4K visit our website each month, but they do not engage. So what happened? Where have all the rosaceans gone?  Back in 2004 there were many volunteers and they were working hard to create a grassroots, rosacea patient advocacy non profit organization. Where are they now?

    Around the same time the RRDi was formed, Zuckerberg began Facebook, a social media and social networking service, with a different but similar platform as the ‘forum’ style platform and Facebook took off and exceeded all expectations and became the number one social platform. Others followed, i.e., Instagram, Twitter, Reddit and that list goes on. 

    According to Search Engine Journal, in 2020 Facebook has 2.45 billion users, Instagram 1 billion users, Reddit 430 million, Snapchat 360 million, Twitter 330 million users, Pinterest 320 million, LinkedIn 310 million. So let's analyze where the rosaceans are on these social media platforms and what they are doing. 

    facebook.png

    When you do a rosacea search on Facebook you can find where rosaceans have gone. The number one Facebook that comes up is the NRS with nearly 40K friends and 41K followers. 
    NRSFacebook.png

    This non profit organization for rosacea has spent 10% of its donations on rosacea research over a twenty year period. 60% of the donations are spent on two private contractors owned by one of the board members. The Board Members of this Non Profit Organization are NOT rosaceans, and are comprised of businessmen (three), dermatologists (two), one RN, and a medical editor. For More Information. This non profit is heavily sponsored by pharmaceutical companies which is shown on its website if you scroll towards the bottom you will see the following:

    NRSsponsors.png
    While this Facebook group is the most popular, do you consider this a grassroots patient advocacy group for rosacea or something else?

     

     

    RSGFacebook.pngRSGfollow.png

    As far as known, the Rosacea Support Group is the next largest Facebook group with 15K followers and 14K likes. It states clearly that this is a non profit organization but there is absolutely no evidence that RSG is registered as non profit. This is David Pascoe's group and his website is making money because there are affiliate links and sponsors for rosacea treatments but there is no evidence that this group engages in any rosacea research or has any influence on the medical community. 

    rosaceafacts.png

    RosaceaFacts on Facebook has 18K followers and likes and is run by the pharmaceutical company Galderma. 

    rosaceaspanish.png

    The Rosacea Spanish Facebook has 6K followers and nearly 6K likes. 

    rosaceaawareness.png

    Rosacea Awareness says it is an actual 'community' and the official link is to StudyKIK.com which is a site for clinical trials. The about page at StudyKik says, "StudyKIK is the leading website where clinical trial companies list their studies and eager volunteers find them to sign up instantly." The Facebook ABOUT page doesn't explain who is running it but on the MORE INFORMATION link at the bottom of the page it links to its Instagram page that doesn't explain who this Facebook account belongs to but obviously it is somehow connected to StudyKik who say they are 'volunteers.' Nevertheless, 5.5K follow and like this Facebook Group. Do you think this social media 'community' has any influence on the medical community as a voice for rosaceans?  It has 13K followers and likes. 

    If you know of any other rosacea Facebook groups which should be in this list, please find the reply button and let us know. 

    instagram.png

    While there are rosaceans obviously on Instagram, figuring out which one is the most popular is difficult to say the least. Some of the ones who come up in the search box are #rosacea, #rosácea, #rosaceatreatment,  #rosaceaskincare, and this list goes on and on. For example, the NRS has an account shown below: 

    NRSinstagram.png

    As previously mentioned about the NRS Facebook group and how this non profit represents businessmen and dermatologists who are the voice behind this organization and is not run by rosacea sufferers, apparently, the NRS Instagram isn't as popular with posts and followers as its Facebook group is.  If you know of an Instagram account that is more popular that should be mentioned, please find the reply button and let us know. There are rosaceans at Instagram but are any accounts representing rosacea sufferers as a united group that influences the medical community about rosacea? 

    reddit.png

    Reddit appears to be the more popular social media website for rosaceans. There are 'subreddits' that are specifically made up of rosaceans while there are other subreddits that discuss rosacea, i.e., r/SkincareAddiction (1.2m members), r/30PlusSkinCare (124K members), r/medical (63.8K members), r/Accutane (29.6K members), r/AusSkincare (27K members) and others but we will mention one rosacea subreddit below: 

    reddit_r:rosacea.png

    You can see the number of members above in this subreddit and now lets try to figure out who runs this? Note below the results: 

    reddit_moderators.png

     

    Does this give you an idea of who is running this huge subreddit?  Is this a registered non profit organization? Is it run by businessmen or medical professionals? What credentials are behind the moderators?  Why do they hide behind cryptic display names?  This gives you an idea of where the rosaceans have gone and rosaceans love it this way, behind cryptic display names. Do you think that this subreddit rosacea group with 21K members have any influence on the medical community to find the cure for rosacea or engage in any rosacea research?  

    snapchat.png

     

    Are there rosaceans on snapchat?  Did a search on 'stories' and got this result: 

    snapchat_search.png

    Did a google search with no results either. So if you know if there are rosacea sufferers on snapchat, can you please find the reply button to this post and tell us what you know. 

    twitter.png

    Did a search on twitter with 'rosacea' and all sorts of 'tweets' come up but there isn't any one post that shows a united effort for rosaceans to come together into one cohesive patient advocacy group. Searched the 'National Rosacea Society' and discovered it has 3201 followers and 563 following on December 1, 2020  (which we mentioned about in Facebook and Instagram). Doesn't appear that there is any attempt with rosaceans to unite with twitter into one large group with a 'voice.' 

    pinterest.png
    Did a search on Pinterest using the 'board' as the choice and got a number of 'boards' shown below or you can see for yourself by clicking here

    pinterestboards.png

    The first one on the top left is Talonted Lex, a beauty blogger, who has rosacea and on Pinterest has 9.5K followers. The second one on the top row from the left is May Lindstrom Skin who has a  'lifelong battle with severe eczema and perioral dermatitis' with 2.6K followers at  Pinterest. The third one from the left top row is Clare Baucom who doesn't explain who she is but has 1.9K followers on her 'Rosacea Sensitive Skincare' and lots of over the counter treatments. This keeps on going but most of the 'boards' are selling over the counter treatments for rosacea. Do you know of any 'board' at Pinterest that is the voice of all rosacea sufferers in a patient advocacy united group that the medical community listens to?  

    linkedin.png

     

    Did a search on LinkedIn and not much happening with rosaceans at this social media business connection site. Professor Tony Chu started a charity named the The Acne & Rosacea Association UK with 57 members. Rosacea Care, who offers treatments for rosacea, is also listed. PCA who also offers treatments for rosacea is listed with 600 members. Not much happening with rosacea patient advocacy movements at LinkedIn. 

    Conclusion

    This is an in-depth look done in December 2020 searching where all the rosaceans have gone and they are happy posting in the above social media groups and could care less if there is any movement to create a grassroots rosacea patient advocacy group like the RRDi. So if you are happy with what is currently happening with where all the rosaceans have gone, good for you.

    Et Cetera

    What is your idea of what a rosacea non profit should be doing?

    Comparing Non Profit Organizations with their Mission

    How Non Profits Work

    Volunteering Benefits

    Grassroots Rosacea Non Profit Organization

    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.  

     

  9. invisionlogo.png.857e16c6cd5f5c76b2661ee Watch the video!

    The RRDi has been using Invision Community forum platform since 2004. When we started in 2004 it was recommended by Warren Stuart who was the assistant director of the RRDi to use what was then called Invision Power Services (later the name was changed to Invision Community). It is a powerful platform with many add-on features and a significant number of developers adding plugins and additional features to the platform.

    Invision Community Clients

    Some very large corporations use the Invision Community platform. Do you recognize any of these companies below?

    IC-clients.png

    Are the above companies successful using the Invision Community platform?  If you scroll past the next section about downloading our beta versions of our mobile app you find two successful medical companies using the Invision Communities platform.

    While all the above companies have their social media accounts as well, these well known companies prefer to continue using the Invision Community Platform, and so does the RRDi prefer using this same platform because of its excellent features. We have invested our donations into using this platform.

    The RRDi website using the IC platform works well on any mobile device. 

    So if you find this platform not to your liking and prefer the social media style platform, we recommend two options for you: 

    (1) Watch this short video about social media rosacea platforms, then watch this video about volunteering as a moderator for any of the RRDi social media accounts, or go to Volunteers page.  Use our contact page and volunteer. 

    (2) Download the beta Android mobile app to your device which is discussed next. You may find it works better for you. Let us know if you prefer the Android mobile app. Use our contact page and let us know. 

    Mobile Apps

    However, with the advent of mobile devices and social media platforms the trend has focused on mobile apps using Android devices found in the Google Play Store. The popularity of using these apps over using a browser to view a website has increased the use of social media platforms such as Reddit, Facebook, Instagram, Twitter, etc. The developers and owners of the Invision Community platform have now announced beta versions of iOS and Android apps for their platform which has been embedded for years using only a web browser, so we have announced with this post here asking for volunteers to download the beta versions and help test these new apps. Please consider volunteering and using these beta versions of the apps. The Apple iOS beta app is no longer available, but may be resurrected if the Android app proves popular. 

    invisionCommunitiesLogo.png.2c7a34d189f8

    Medical Clients Who Use Invision Community Platform

    99nicu.pngpfimc.png

    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.  

  10. grassroots.png

    Invision Community
    "Grassroots movements are associated with bottom-up, rather than top-down decision making, and are sometimes considered more natural or spontaneous than more traditional power structures." [1] We have chosen the Invision Community platform to interface between members (allowing also a private Tapatalk private forum). We prefer this over the social media platforms which are obviously more popular, however, we do have accounts with the major social media platforms if you prefer that sort of engagement (scroll down to the subheading RRDi Social Media Accounts). If you are interested in volunteering at any of the social media RRDi accounts please join and volunteer (mention this when you register that you would like to volunteer to post in one of the RRDi social media accounts, i.e., Facebook, Instagram, Reddit, etc.). We need volunteers to moderate the RRDi social media accounts! Watch Less than one minute eight second trailer for the following longer 7 minutes 27 second grassroots video.

    LONGER GRASSROOTS VIDEO

    Social Media Groups are Top Down Decision Making 
    All the rosacea social media groups (except those run by the RRDi) are top-down decision making groups. Whoever runs the group, i.e., Facebook, Instagram, Reddit, Twitter, etc., make all the rules and you have no choice who runs the group. Whoever 'owns' the group makes all the decisions (rules) and are not grassroots decision making. There are few, if any, social media groups that are grassroots, letting the members make the decisions on how the social media group is run. The exception is our RRDi social media accounts which allows the members to choose who sits on the board of directors of the RRDi. The reason we are explaining this is that all the rosaceans have gone to social media. It you want to volunteer and manage or be a moderator of the RRDi Social Media accounts read this post and watch the video about volunteering

    RRDi Grassroots Organization
    The RRDi is a grassroots organization founded by rosacea sufferers who are volunteers. The board of directors are all rosacea sufferers and their motive to  volunteer is to help rosacea sufferers. Now compare that with who serves on the 'other' rosacea non profit organizations board of directors. [2] As far as we know there are only three other rosacea non profit organizations (ARSC, AARS, and NRS) and possibly one other, the AAD that might spend a tiny, tiny bit of money on rosacea research. All the board members of these 'other' non profits are NOT rosacea sufferers and are mostly comprised of businessmen and medical professionals (dermatologists) who have a vested interest in rosacea since they may receive a salary or benefit from money spent on private contractors used by the non profit organization, or receive compensation for attending conventions or meetings sponsored by the non profit organization. Follow the money where the non profit spends the most of its donations on, and if you take the time, you will discover it is very little on rosacea research. Why not watch the video on rosacea research to get you up to speed?

    You may wonder how non profits work?

    The members of the RRDi are mostly rosacea sufferers [rosaceans] and have a say who serves on the board of directors of the RRDi (the charter requires that the board members suffer from rosacea). The board of directors of the RRDi are sometimes chosen by the other board members but every five years the voting members of the RRDi may vote who may continue to serve on the board of directors. The members could replace the entire board of directors. This is bottom up decision making. 

    The other rosacea non profit organizations are NOT grassroots and work from the top down. How do the other rosacea non profit organizations choose their board members? Answer: Top down decision making. 

    What Motivates Board Members?
    Money is the motive on who makes the decisions on the spending of the donations with the 'other' top down rosacea non profits and if you follow the money you will find that the board of directors make sure they benefit in some monetary way. This is a top down direction since the other non profits are run by NON rosaceans and have their own personal agenda so that members of the board somehow benefit with some compensation with the spending of the donations. Money is usually at the root of any top down decision making process. 

    Grassroots Motive
    So if you have similar grassroots philosophy why not join the RRDi and volunteer. If money is your motive, go to the 'other' rosacea non profits. [2] If volunteering by helping other rosaceans is your motive, you have found the only grassroots rosacea non profit organization on planet earth. [3]

    Only One Non Profit Organization Run by Rosaceans
    There is only one non profit organization for rosacea founded by rosacea sufferers, this one, the RRDi. All the others are founded by non rosaceans and all you do is see who is serving on the board of directors and note how the board members on each rosacea non profit benefit how the donations are spent (each board determines how the donations are spent). Follow the money (where does most of the donations end up being spent on?).

    Donations Spent on What?
    If you could gather together say 10K rosaceans into one non profit organization for rosacea and fund a paper on a rosacea topic and receive from each member donating just one dollar, it would be a cinch to get a reputable medical clinician to investigate further into whatever topic is chosen and nail it to the wall with a double blind, placebo controlled, peer reviewed study. However, if you did get 10K rosaceans together to donate each $1 that would be a miracle in itself. What might that subject be? Alas, this dream, which began over sixteen years ago with the RRDi was formed, hasn't brought about such unity among rosacea sufferers. Instead, rosacea sufferers are splintered into private social media groups, i.e., Facebook, Instagram, Reddit, etc. and continue to parrot the non profit organizations for rosacea that are run by non rosacea board members with a top down decision making process.  And rosaceans prefer and love it that way. Do these social media rosacea private groups engage in any rosacea research? What do you think?

    Grassroots Glimmer of Hope for Rosacea
    However, there is perhaps a glimmer of hope. The owner of the Rosacea Forum, rosaceagroup.org, formed a non profit organization [RRF] in 2004 and gathered together a group of rosacea sufferers and collected a total of $16K and donated all of this to the NRS. So, it can be done. However, the RRF non profit for rosacea dissolved. What happened? Read for yourself. This example of the RRF is a grassroots non profit that actually did something in sponsoring their own research, except they gave the $16K to a non profit that is run from the top down. A brief glimmer of grassroots hope for rosacea. The RRF was a flicker of light in a dark rosacea world. 

    Grassroots Non Profits Beacon of Light
    An example of an excellent grassroots non profit organization beacon of light is the The Erythromelalgia Association that actually sponsors their own research on erythromelalgia, so it can be done, and is done by this grassroots non profit organization. Do you know of any other grassroots non profits that are an example like this? Why not tell us about it by replying to this thread? Watch the video on this page about the EA organization. 

    Rosacea Independent Sponsored Research 
    Is a grassroots motive something to consider, or are you content with the current status quo rosacea research being done by a 'top down' decision making process used by the 'other non profits for rosacea' whose board members are not suffering from rosacea? Do you think the paltry rosacea research being sponsored by these 'top down' 'other' non profit organizations for rosacea is the best that can be done? Are you aware of what most rosacea research being conducted is sponsored by? Most rosacea research is being sponsored by the skin industry. [4] Do you think a grassroots non profit organization for rosacea could sponsor their own independent rosacea research? As Miracle Max points out, 'It would take a miracle." Watch the video on this topic on this page

    Reply to this Topic

    There is a reply to this topic button somewhere on the device you are reading this post. 

    End Notes

    [1] Grassroots, Wikipedia

    [2] Links, Other Non Profit Organizations 

    [3] Volunteering

    What Community Support Means to You?

    [4] Rosacea Research in Perspective of Idiopathic Diseases 

    Rosacea Research in Perspective of Funding

  11. Update

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    MultiStat®, QMT

  12. 180px-Lactiflora1b.UME.jpg
    Paeonia lactiflora image courtesy of Wikimedia Commons

    "Paeoniflorin is a chemical compound which is one of the major constituents of an herbal medicine derived from Paeonia lactiflora. It can also be isolated from the fresh water fern Salvinia molesta." Wikipedia

    320px-Salvinia_molesta.jpg
    Salvinia molesta image courtesy of Wikimedia Commons

    320px-PaeoniaSuffruticosa7.jpg

    Peony image courtesy of Wikimedia Commons

    "The peony or paeony is a flowering plant in the genus Paeonia, the only genus in the family Paeoniaceae. Peonies are native to Asia, Europe and Western North America.....The herb known as Paeonia, in particular the root of P. lactiflora (Bai Shao, Radix Paeoniae Lactiflorae), has been used frequently in traditional medicines of Korea, China and Japan."
    Wikimedia

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