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  1. Admin

    NRS Form 990 Review

    NRS Review of Form 990 for 2017 In December 2018, the NRS published its Form 990 for 2017. This year marks the fourth highest banner year in donations, the first highest banner year was in 1998 which the donations totaled over $1 million dollars ($1,148,375). In 2017, the NRS received in donations $929,730.00, just $216,645 short of its 1998 banner year. So let's review what the NRS spent its donations on. First off, let's be clear that Samuel B Huff, Director, signed off on page one of the 2017 Form 990, and on page 7, under the heading, Part VII, Compensation, it shows that Samuel B Huff, President, was paid $119,100 under the column, Reported compensation from related organizations. Also Mary F Erhard, Secretary, was paid $27,963 making a grand total here of $147,063. Grants spent this year on rosacea totaled $74,443. So if you do the math, the total spent on rosacea research grants in 2017 amounts to 8% of the total revenue donated to the NRS. Putting this into something you can understand a little clearer, for every dollar donated to the NRS 8 cents was spent on rosacea research grants. What did the NRS spend the rest of the money on? On page 10, Part IX, Expenses, it shows a list totalying $763,980. Of that total, $105,494 was spent on Information Technology. You can read the rest yourself. Scrolling down to Schedule R (Form 990) Part V, you will note there are two corporations listed under TRANSACTIONS WITH RELATED ORGANIZATIONS, which are the following: Glendale Communications Group, Inc. $498,910. Park Mailing and Fulfillment, Inc. $70,194.00 The above two corporations is where a total of $569,104 was spent which are the related organizations the NRS used and this amounts to 61% of its total donations received. These two private corporations are owned by Samuel B Huff, the Director/President of the NRS. For proof, read this post. Read the NRS Form 990 for 2017: nrs_990_2017.pdf
  2. Skin Pharmacol Physiol 2007;20:199–210 DOI: 10.1159/000101807 Beneficial Long-Term Effects of Combined Oral/Topical Antioxidant Treatment with the Carotenoids Lutein and Zeaxanthin on Human Skin: A Double-Blind, Placebo-Controlled Study P. Palombo, G. Fabrizi, V. Ruocco, E. Ruocco, J. Fluhr, R. Roberts, P. Morganti
  3. Admin

    Volunteering

    From 1998 through 2005 there was an incredible volunteer spirit that drove the formation of the RRDi. Since 2005 the force that motivated so many to bring together rosacea sufferers into a non profit organization has dwindled to just a flickering wick. Why is it that rosaceans (rosacea sufferers) don't volunteer anymore? Andy Seth, an entrepreneur, has a blog post, The Way We Think About Volunteering Is Dead Wrong, states, "research shows that the happiest volunteers are those who give 2 hours per week. That’s it. 2 hours." If the RRDi could get any rosacean to volunteer 2 hours a weeks, that would be miraculous. Are there volunteers who actually volunteer that many hours a week? There must be, otherwise the study is bogus. If we could get any RRDi member to just post their thought or experience with rosacea for 15 minutes a week that would be incredible. We have dotted the RRDi forum with requests to RRDi members to simply post anything and the 1200 plus members as of this date are simply miniscule when it comes to posting. Getting our members to post is a challenge. If you have some insight how to get our members to post, we are all ears. You can reply to this post and comment to your heart's content. Of course, that is the issue, the RRDi members' hearts are not content to post. Why is that? The research Mr. Seth referred to may have been the study commented on by the American Psychological Association that reports, "Volunteers lived longer than people who didn't volunteer if they reported altruistic values or a desire for social connections as the main reasons for wanting to volunteer, according to the study." This same study, Andrea Fuhrel-Forbis, the co-author concludes: "It is reasonable for people to volunteer in part because of benefits to the self; however, our research implies that should these benefits to the self become the main motive for volunteering, they may not see those benefits." One of the benefits is what is called 'helper's high' which has been scientifically confirmed. [1] Of course, if a RRDi member who has rosacea helps another rosacea sufferer that would be the basis for receiving the 'helper's high.' Rosaceans supporting rosaceans. In trying to understand why volunteering amongst rosaceans has continued on this downward course, and googling this for an answer, The Guardian has an article about this subject and concluded, "But while the benefits of volunteering are clear, there is worrying evidence that the people who could benefit most from giving their time are precisely those least likely to be involved." Volunteer Match (which the RRDi has joined) has an article on this subject and states that the Bureau of Labor Statistics Report shows "that volunteer rates have been steadily declining for over a decade," [2] and comments, "There’s an endless supply of reasons that could explain why volunteer rates are falling. Last year, upon seeing the results, VolunteerMatch President Greg Baldwin argued that volunteer rates are falling because we as a nation don’t invest enough resources in the nonprofit sector. Without resources, nonprofits simply don’t have the capacity to effectively engage volunteers. Someone in the comments of that post argued that the falling rates can be attributed to the fact that more people are overworked with less time on their hands. Others say people are simply lazier than they used to be. I personally think it could be attributed to a shifting trend away from community involvement, due to the emergence of online communities, young people moving more often, and other factors." [3] In the above article mentioned [3] there are a number of comments and I think Ron from Florida's [April 16, 2016] comment is insightful: "When I was younger, volunteering and giving back was part of life. It was something that we did and didn’t think twice about it. I don’t see that same philosophy these days. It’s to the point that schools here require some level of community service to complete your graduation requirements." Stem Learning reports, "It is suggested that stagnating volunteer numbers and in some areas, reducing numbers of volunteers, along with cuts made by local authorities falling disproportionately upon the volunteering sector funding, suggests a potential fall in people volunteering per se. Furthermore the 2015/16 Community Life survey, highlighted 14.2 million people formally volunteered at least once a month in 2014/15 and although rates are mostly unchanged, it appears irregular volunteering appear to show a 5% drop!" Carey Nieuwhof lists 6 REASONS YOU'RE LOSING HIGH CAPACITY VOLUNTEERS. I don't see how those six reasons are related to the RRDi, but I am all ears to anyone who can point out to me what the RRDi isn't doing or not doing with regard to Carey's six reasons. Our page on volunteering covers most of what Carey is discussing. Without a doubt this explains the situation. Any thoughts on this subject would be much appreciated. Online Volunteering Dr. Natalie Hruska says that the studies indicating a drop in volunteering over the past decade "do not factor in kinds of volunteerism today, like virtual volunteering" and writes there is "a necessity to redefine what volunteerism is and how we understand it today." [4] Volunteering Statistics "About 25 percent of Americans volunteered in 2015, according to federal data, compared to a global average of just 10 percent." [5] "The volunteering rate has declined slightly from 27 percent in 2002 despite the efforts of many American leaders..." [5] End Notes [1] Helper's High: The Benefits (and Risks) of Altruism, Psychology Today [2] According to the 2015 report, 24.9% of the U.S. population over the age of 16 volunteered at least once in the past year. In 2011, this percentage was 26.8%, and in 2005 it was 28.8%. "The volunteer rate declined by 0.4 percentage point to 24.9 percent for the year ending in September 2015..." VOLUNTEERING IN THE UNITED STATES — 2015, U.S. Bureau of Labor Statistics, Thursday, February 25, 2016 [3] The U.S. Volunteer Rate Is Still Dropping. Why?, Tess Srebro | March 25, 2016 | Industry Research | Engaging Volunteers, Volunteer Match [4] Dr. Natalie Hruska, April 12, 2016 POST to the article in end note 2. Dr. Hruska has a video below that discusses online volunteering: Dr. Hruska has written a book on this subject, Managing the First Global Technology: Reflections on a relevant application of the Internet, in Kindle or Paperback. [5] How to get more Americans to volunteer, The Conversation Civil society organization workforce as a share of the economically active population, by country, 1995-2000, John Hopkins Center for Civil Society Studies [6]
  4. Dr. Ben Johnson, RRDi MAC Member, discusses a holistic approach to treating rosacea in an interview with Lori Crete, Licensed Esthetician, Spa 10.
  5. I had a mole on my forehead that I was told that 3% Hydrogen Peroxided might remove, so I dabbed a little on the mole and after some weeks it did indeed remove the mole. However, I noticed that the rosacea or seb derm on my forehead that was near the mole also cleared up. So I experimented and began putting 3% Hydrogen Peroxide on my red spots on my forehead and after some days they began to fade away too! Since then I have been putting 3% Hydrogen Peroxide on all my facial rosacea red spots and letting it dry, then adding the ZZ cream, just before bed and this regimen seems to really work for me. I also have taking the Lutein/Zeazanthin 40 mg capsule each day. I also avoid sugar as much as possible and eat very low carbohydrate.
  6. Admin

    Placebo Effect

    An interesting article in The New York Times Magazine states, "Enough people reported good results that patients were continually lined up at Mesmer’s door waiting for the next session." Dr. Mesmer is where the word mesmerize comes from. The article explains how 'double blind' placebo controlled clinical studies originated and why drug companies have to differentiate between a drug's actual pharmaceutical effect and the placebo effect. I particularly like this paragraph in the article: "What if, Hall wonders, a treatment fails to work not because the drug and the individual are biochemically incompatible, but rather because in some people the drug interferes with the placebo response, which if properly used might reduce disease? Or conversely, what if the placebo response is, in people with a different variant, working against drug treatments, which would mean that a change in the psychosocial context could make the drug more effective? Everyone may respond to the clinical setting, but there is no reason to think that the response is always positive. According to Hall’s new way of thinking, the placebo effect is not just some constant to be subtracted from the drug effect but an intrinsic part of a complex interaction among genes, drugs and mind. And if she’s right, then one of the cornerstones of modern medicine — the placebo-controlled clinical trial — is deeply flawed."What if the Placebo Effect Isn’t a Trick?, The New York Times Magazine
  7. Admin

    Rosacea Diet

    Rosacea Diet Triggers always come up in a discussion of rosacea. Just about every dermatologist parrots the NRS list of proposed rosacea diet triggers, especially physicians explain to their patients to avoid "spicy food and wine." There is a much longer trigger factor list that include other proposed food and drink triggers. An interesting read is Liver, Yogurt, Sour Cream, Cheese, Eggplant, and Spinach that discusses this subject. There are some who can eat anything and their skin looks great. This is probably due to genetics. There is a theory that rosacea is genetic and we have simply been dealt with a bad set of rosacea prone genes. Whether diet really does affect rosacea or acne, do you think that eating a diet with the proper proportion of protein, fat, carbohydrate and essential nutrients improves health? If a person has a poor diet without a proper proportion of the three food groups and lacks the essential nutrients, would that effect the skin? The Rosacea Diet that I have proposed since 1999 you can obtain for free if you join the RRDi and mention when joining you want a free copy and explains in detail what to ingest and what to avoid for just 30 days to see if this improves your skin. Most rosacea sufferers will not do this because it means reducing your carbohydrate intake to 30 grams a day for 30 days, a task that very few are willing to undertake because sugar is addictive. Also due to a misunderstanding on what carbohydrate actually is, many think that carbohydrate is an essential nutrient which is far from the truth. The Rosacea Diet is simply a short test that clearly shows whether reducing carbohydrate for thirty days helps clear your skin. After this simple test one can modify carbohydrate intake according to one's individual situation and may be able to use this method to help control your rosacea, because in RF you will find that the majority will tell you that diet does indeed affect rosacea and acne. While there are a few who claim diet doesn't have anything to do with rosacea, these are definitely in the minority. It would be good to substantiate this in a poll, but the NRS has already done that with its survey asking what food and drink triggers your rosacea and came up with the 'official' diet trigger list which all the dermatologists parrot, namely 'spicy food and wine.' Did the NRS even mention sugar or carbohydrate in its poll? No. The NRS avoids mentioning sugar or carbohydrate as a rosacea diet trigger. The RRDi does list sugar and carbohydrate as rosacea diet triggers.
  8. Admin

    Autumn and Rosacea Flare-ups

    Thanks Apurva Tathe for your tips.
  9. If you have a question or concern with your rosacea please post here and get help from our community of rosaceans.
  10. The NRS Weblog reports on October 22, 2018, "Over the course of nearly two decades since the National Rosacea Society (NRS) issued its first research grants, this program has fostered dramatic strides in the understanding of rosacea, and has now awarded more than $1.5 million to date. Funded exclusively by donations from individuals, the NRS research grants program was established in 1999 to provide support for medical research into the potential causes and other key aspects of this poorly understood disorder that may lead to improvements in its treatment, care and potential cure." [1] [bold italics added] The report then notes some of the notable studies funded with more than $1.5 million dollars, which some of these are quite good. The NRS states clearly on this blog report that all the money spent on these studies came from individual donations from members of the NRS. However, let's really look at the math on this. The RRDi has kept an accurate record of all the donations from 1998 thru 2016 and the total amount reported donations to the NRS amounts to $13,898,646. [2] The total amount reported by the NRS spent on rosacea research studies during this same period amounts to $1,403,031, which is a difference of about $96,969. You might minimize this difference but $96K to the RRDi is a big deal. If the RRDi had $96K we would spend 90% on rosacea research studies. But what is a even a bigger deal is that the NRS reports over this same period that only 10.09% of the amount donated to the NRS comes from public support (what the NRS reports in the weblog articles as 'exclusively by donations from individuals). So what does does the math now reveal? $1,402,378.38 is the actual amount reported by the NRS to the Internal Revenue Service. That is a difference of $97K, which is closer to the same amount in the previous paragraph. [2] Ok, just a $1K difference, but it helps confirm the math. So what's the big deal you ask? Go back and look at the total amount of donations reported by the NRS during this time period. Yes, almost $14 million. Look again at how much money was spent on rosacea research studies? Actually $1.4 million. So how much money of the TOTAL donations was spent on rosacea research? You do the math. Ok, I will do it for you: 10%. So for every dollar donated to the NRS ten cents is spent on rosacea research. One might ask, where did the other 90% of the donations come from when only 10% comes from public support? If you look on the NRS website home page, scroll down till you read, "Maintenance of this website in 2018 is supported by unrestricted educational grants from the following companies so that individual donations can be used to fund research" and notice the list of companies who sponsor the NRS, pharmaceutical corporations with a vested interest in rosacea. However, the NRS reports that all the rosacea research studies are "Funded exclusively by donations from individuals." So what are these educational grants funded by these pharmaceutical companies? There are none listed that are sponsored by any pharmaceutical companies shown on the NRS website. Why not ask the NRS? Better yet, why not ask the NRS for a copy of the Form 990 for 2017 that you are entitled to review yourself and see where all the money is spent. Yes, it takes time to read a Form 990 but you can get the gist of the entire report in about a twenty minute review. For example, here is a review of the 2016 Form 990. If it is really true that the public support reported amounts to $1.4 million, just think about what rosacea research could have been accomplished if more money was spent on rosacea research rather than the 10 percent the NRS spent of its total donations? Say 20 percent? Or what about 50%? How much should a non profit organization for rosacea spend on rosacea research of its total donations? If you are meditating on all this, you might ask, where did most of the 90 percent of the donations go to? What was most of the donations the NRS received over this period spent on? The answer is two private contractors, that are owned by the president of the NRS, Sam Huff. And the most surprising thing about all this is that members of the NRS don't care how the NRS spends its donations and keeps giving the NRS donations. I still haven't figured out why the members of the NRS keep donating but it is obvious they love the NRS and how it spends its donations. For more info. End Notes [1] NRS Research Grants Program Drives Key New Discoveries Posted: 10/22/2018, NRS Weblog [2] NRS Form 990 Spreadsheet 1998 thru 2016
  11. The NRS has funded a study that differentiates the difference between Subtype 1 (erythematotelangiectatic) rosacea and Telangiectatic Photoaging (TP), a rosacea mimic which is a condition with visible blood vessels from sun damage. The NRS report on this subject states, "mast cell tryptase, an enzyme released by mast cells that is associated with inflammation, was found to be four times higher in subtype 1 rosacea skin than in TP skin, and 25 times higher than in the control group. Rosacea skin also showed significantly more evidence of matrix remodeling, a skin damage process leading to greater vasodilation." [1] It should be noted that the subtype classification of rosacea has been improved with the new phenotype classification so that Subtype 1 has been split into two distinct phenotypes, Phenotype 2 and Phenotype 3. End Notes [1] New Study Defines Rosacea and Damage From the Sun Posted: 06/15/2015, NRS Weblog
  12. Admin

    Is Coffee A Rosacea Trigger?

    A more recent study concludes: "Increased caffeine intake from coffee was inversely associated with the risk of incident rosacea. Our findings do not support limiting caffeine intake as a means to prevent rosacea. Further studies are required to explain the mechanisms of action of these associations, to replicate our findings in other populations, and to explore the relationship of caffeine with different rosacea subtypes." See end note 3 in the first post of this thread for the source.
  13. Thanks Apurva, and also thanks for your article on co-existence.
  14. Hi Apurva, I was reluctant to download a docx file since it is an odd way of posting instead of simply copying and pasting your document into the post? I checked to see if your file contained any viruses or malware by using VirusTotal and it passed, so I opened the file and I am copying and pasting your article here for the benefit of everyone else not having to go through this process. It might be best to simply write your posts. Here is the contents of your article below: begin article___________ Co-existence of Rosacea, Seborrheic dermatitis and Blepharitis There have been a lot of reports on accounting other chronic skin conditions with rosacea and it is true that you can have multiple conditions simultaneously with rosacea. I have experienced rosacea, seborrheic dermatitis and blepharitis together with the combination of erythema and telangiectasia. The very first time this condition appeared as a lesion on half part of nose and cheek and then covered the other part of the face with having scaly torn skin and inflamed eyes. After years of my experience and dealing with these conditions, the symptoms include : Swollen flushed skin, visible dilated blood vessels with stinging and burning sensation on face. SD can cause skin scaly and flaky and can burn with itch and appears mostly on front hair line,forehead and eyebrows that if you itch the flaky and crusty skin falls off like dandruff. Blepharitis usually involves upper eyelid and causes inflamed eyelids, teary red eyes and the most important visual aspect is greasy dandruff like scales form on eyelashes covering half of it. The conditions can go beyond your cheeks and nose and affect earlobes and chin area and can cause flaky and rough chin area with small bumps. The flare ups can last anywhere from few minutes to one day or to one month and they again come back but when it goes you can feel the temperature decrease but it can leave red bumps that looks like acne but gradually the red appearance goes with time but it waxes and wanes. Co-existence : The occurrence of other chronic inflammatory diseases like seborrheic dermatitis and blepharitis are common in patients with rosacea and the good news is, the treatment of other condition does not aggravate the signs and symptoms of rosacea and lessen the flare ups in the meantime. Blepharitis is an inflammation of the eyelids in which the base of the eyelids are swollen and red and flaky greasy like crusts occur around the eyelashes with frequently mildly sticking eyelids and flaky dandruff of eyebrows sometimes called seborrheic blepharitis.(1) It is reported that demodex can worsen the condition of rosacea but it can also aggravate the condition of seborrheic blepharitis.(2) SD can typically occur as rash on the face and a sheet of lesion on back and middle chest area and middle and underneath breast lines. The underlying cause of seborrhoeic dermatitis is not clear, but a type of yeast called Malassezia furfur is involved.(3) I will emphasize these conditions thoroughly in later posts but for now I will explain the treatment I had with these three conditions : When my doctors diagnosed these three conditions, first they prescribed me low dose oral doxycycline capsules (100mg) daily at night. 1. Doxycycline is an antibiotic used for treating bacterial infections.The drug is also sold under the brand names Oracea, Doryx, Monodox, Periostat, and Vibramycin. Doxycycline is in a class of medications called tetracyclines, and it's a broad-spectrum antibiotic, it works against a wide range of bacteria.This medication is used to prevent malaria and treat a wide range of infections, including: skin infection.(4,5) Side effects: stomach upset, constipation, nausea, heavy head. 2. You can apply topical metronidazole gel 0.75% on the affected skin area. Apply a thin layer of gel once or twice daily.I used to apply once at night daily. It is an antibiotic and it works by decreasing redness and inflammation by stopping the growth of certain bacteria and parasites.This antibiotic treats only certain bacterial and parasitic infections. It will not work for viral infections. (6) Side effects : burning and eye irritation if it gets close to the eyes. 3. Ketoconazole 2 % and Zinc pyrithione 1 % (Shampoo) for the fungal and yeast infections of the skin. Ketoconazole an active ingredient works by interfering and weakening with the formation of the fungal cell membrane. It better works with seborrheic dermatitis and blepharitis. Thoroughly apply on wet hair and massage and leave it for 5 minutes and then rinse it out. It does not make lather like other shampoos. Take a drop on finger, rub it and apply gently on eyelashes on tightly closed eyes and rinse it properly. With 8 weeks of proper use twice in a week completely cured me with SD and blepharitis. Side effects : itchy and dry scalp 4. If you have dermatitis on your chest and breast lines and back, you can use the composition of Boric acid and Clotrimazole cream together. It works by reducing inflammation and inhibiting the growth of fungi. Apply a thin layer of this base and rub until it absorbs completely twice or thrice daily. I applied this on my front and back area for four to five days and it worked wonder and the lesions gradually disappeared. Note : before taking any above medication consult your doctor or physician and alcohol should not be consumed during any medication it can worsen the condition of rosacea and if you are pregnant or on breast-feeding and any other condition like diabetes or heart problem, take this medications as directed by your doctor. Instead relying on oral and topical steroids my doctor prescribed me with bacterial and fungal medications because taking steroids for SD and blepharitis can exacerbate the condition of rosacea and relying on antibiotics and anti-fungal treatments can lessen the condition of SD and blepharitis and keep the rosacea at bay. References : https://www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/blepharitis.(1) http://eyewiki.aao.org/Blepharitis.(2) http://www.londoneyeunit.co.uk/services/blepharitis/.(3) https://www.everydayhealth.com/drugs/doxycycline.(4) https://www.webmd.com/drugs/2/drug-8648-7073/doxycycline-hyclate-oral/doxycycline-oral/details.(5) https://www.webmd.com/drugs/2/drug-6426/metro end article_________________
  15. Admin

    Treatments for Demodex Skin Mites

    Thanks so much for your post, very detailed and informative and without a doubt will help many.
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