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  • Why Form Another Non Profit for Rosacea Sufferers?

    What do you expect from a non profit organization for rosacea? Should the administrators and founders of the non profit organization use most of the donations to pay private contractors that are owned by the director of the non profit organization who also sits on the board of directors? Or should the non profit for rosacea spend most of its donations on conventions for dermatologists?

      by Brady Barrows, Founder, RRDi

      The chief reason I formed the RRDi was when I began investigating how the National Rosacea Society (NRS) spends its donated funds (60%) on private contractors spending about 10% for rosacea research. However, the sad reality is that most rosacea sufferers could care less how the NRS spends its donations. If they did they would do something about this. If you do care, why not read the facts below: 

      On average over many years, the NRS spends approximately 10% to 11% on rosacea research while receiving in donations millions of dollars. To put that in terms you can easily understand, for every dollar the NRS receives in donations 10 cents is spent on rosacea research. The rest goes mostly, over 60%, to private contractors that are owned by the president/director of the NRS, Sam Huff. 

      The NRS is a 501 c 3 non profit organization. Many are unaware that all non profits who make $50,000 or more in a year are required to file Form 990 with the Internal Revenue Service of the USA which is then public knowledge for anyone to read. In the past Form 990 has not required disclosure of who donated the funds (in 2015 there was a notable change about disclosure of donated funds) however, the non profit organization is required to show the percentage of funds from the public or whether the funds are private donations. Several years ago I began reading the Form 990 that the NRS reports and was shocked at how the funds were spent. I encourage you to read all these Form 990 reports that the NRS files with the IRS.

      For instance, in 1998 the NRS received in donations $1,148,375 (over a million dollars!). Of this, only 2.15% of this amount was from the public while 97.85% of this amount came from pharmaceutical companies. Of this total amount the NRS spent only $16,118 (1.5%) on rosacea research. [1] That means that for every dollar donated in 1998 only 1.5 cents was spent that year on rosacea research. To put this in a visual graph see below:
      1998NRSdonationsexpenses.png
      The total expenses that year were $830,856 of which $516,156 (62%) was spent on one private contractor, Sam Huff and Associates. Sam Huff is the director of the NRS. At the time, I thought $1.1 million dollars could be better spent. Why wasn't $1 million spent on rosacea research and the rest on running the organization? I thought rosacea sufferers could do a lot better with donated funds than how the NRS has been spending donated funds. This was the first Form 990 that I read and it knocked my socks off. Are you not shocked as well? Read the NRS Form 990 for 1998 yourself if you have doubts.

      I then discovered a lot about non profits by educating myself on how they work. For example, I learned that many non profit organizations spend very little on their 'mission' and give huge amounts of donated funds to the directors, salaried employees, or to private contractors. For more information on this, read Comparing Non Profit Organizations with Research.

      It is not easy to form a non profit organization. The IRS has made it quite difficult to obtain the 501 c 3 recognition. Basically non profits can organize just about any way they want but getting the IRS to recognize and approve a non profit is another matter that would take too many paragraphs to explain. However, I was able to form the RRDi and get the IRS to approve our non profit and have the recognition letter to prove it. However running a non profit with total volunteers is another matter that is something to write about later. Back to the NRS. I kept following how the NRS spends its donated funds as a non profit.

      The pattern of the NRS since 1998 has been basically the same. 1998 was the only year that the NRS spent only 1.5% on rosacea research. The years since that banner year of 1998 when the NRS received over $1.1 Million US Dollars the NRS has decided to up the money on rosacea research from 1.5% to about 10% on average. Whatever the amount donated the total spending on rosacea research remains about 10 per cent on average after that banner year of 1998. It should be noted that during this same period around 60% of the donations is spent to private contractors owned by Sam Huff, director of the NRS. From 2001 on, the name of the private contractor was changed to Glendale Communications Group, Inc., owned by Sam Huff, and Park Mailing and Fulfillment, Inc., also owned by Sam Huff (view screenshots of the Illinois corporate lookup search results). Most of those years the NRS spent about 10% of its total donations each year on rosacea research. That means that for every dollar donated to the NRS about ten cents is spent on rosacea research. On average for many years around 60% of the donated funds are spent on private contractors owned by the director of the NRS. [2]

      My posts and comments about the NRS for succeeding years are listed in the end notes. [3]

      The other non profit for organization that spends most of its donations on conventions for dermatologists is the AARS

      What do you think a non profit for rosacea should spend its donations on?

      Brady Barrows RRDi Director

      End Notes

      [1] NRS Form 990 for 1998

      [2] NRS Form 990 Spreadsheet 1998 thru the most recent published

      [3] Review of NRS Form 990 for previous years

      My post and comment on how the NRS spent donations in 2013 can be read by clicking here.

      My post and comment on how the NRS spent donations in 2014 can be read by clicking here.

      My post and comment on how the NRS spent donations in 2015 can be read by clicking here.

      My post and comment on how the NRS spent donations in 2016 can be read by clicking here.

       

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      • I would like to just start out with saying you guys are just AWESOME! I am so impressed that it kind of makes me speechless. I will check all the advise that has been offered here and see what works for me. Thank you both for taking the time to respond in such a meaningful way. I have had some substantial health issues this year and I have to say it has made me more jaded about the health care templates of today. Some is good and some is just a careless conveyor belt approach. Yes I agree completely that if you are rich you can maneuver around so much of the road blocks so many greedy types are creating. Robber Barons have been around for a very long time and we have ours too. The greed is just scary and just blatant. Before it was much more under ground. Now it is done with impunity and the acceptance of this new standard is pretty shocking. It makes me beyond sad that we haven't really pushed things to benefit all. I am very naive about so much even at 63yrs old. I have had to learn to be more proactive and cautious since I am just another number and not someone to care about. After awhile you just get weary from this approach. For years I was so appalled at the way so many of my doctors just failed to give good advice or cared or knew about how to deal with all my inflammatory expressions. We should be so further along by now. That explains why so many are becoming more proactive and not defaulting to the system as much as we used. I was friends with a young intern decades ago. One thing he said always stood out for me which was completely out of character for him. I have a terrible memory but it is odd things like that, that burns into your memory where your gut knows there maybe something to what you heard but not sure what it is but you know to memorize it for the future. He said he was so surprised at how medicine really hadn't improved much. I first thought he was being overly dramatic and jumped in giving off examples where it had. But I was healthy and young at the time and really didn't understand personally what he meant by it but it still stood out for me that maybe there is more to that than I realized. Now that I am older and having to face some bigger health issues I now get what he was trying to convey. Duhhhhh He was a pediatrician and he felt overwhelmed by the lack of treatments or cures for kids. That was 35 yrs ago. Even then the press was always talking about all the improvements in medicine but it was just fluff stuff not enough of the real important stuff. Just enough to make it look like what they are doing is credible and worth hundreds of dollars to find out. Kind of like the carrot and the mule. I don't know what the answer is but I do know that not enough research is being done due to the lack of funding with worthy researchers not researchers for hire for big pharma or university professors trying to get tenure and a big payout. I wish our politicians were not owned by corporations and would really vote based on what is best for all. Even if we have the answers I don't think they have the will  to really act on it. The greed is just relentless and involved with every facet. By just experimenting on my own I found that what I put in my gut improved so many things and not one doctor even broached this topic. That made me super wary of wasting money going to them. So many times I have had asked about this or that specifically and the doctor redirects the conversation and I would come away with few answers and I am sick of that too. If you don't know then say so. I kind of realized that they don't know much and just guessing too much of the time and I am paying hundreds of dollars for this too! I avoided doctors for about 4 to 5 yrs because I lost faith in the system. Some have caused me great harm like Paxil that was handed out like candy to shut patients up and keep us out of the waiting rooms. So I am careful about just taking advice from doctors on what they think I need and make sure I am sure they are not just using me to help their bottom line. I am not alone in this thinking since I have noticed many are just fed up with their doctors and healthcare providers in the lack of real cures or help. I am also done with non profits for conditions that duplicate efforts and are not really doing much but creating jobs for people who are not really providing much in a way to get to hard answers on it all. I do think cancer is a big money maker. Many are relying on this field to bring in the big dollars which it does and I can see the conflict of interest with so much in health care. I have this amazing dentist who is finally retiring at 75 yrs old. He really cares about his patients and he has spoiled me terribly with the way he has fixed my mouth after decades of greedy dentists who didn't take the time for malocclusions. The improvements he made really had a huge impact on pain too. He says it doesn't pay dentists enough to do that work. That explains why my mouth got to such a bad state going to so many different dentists over the years. It is systemic in this sector. He is older and should have retired years ago but he loves doing what he does part time. He is master at what he does. I now understand the difference in a good dentistry and a poor approach. He has tried to mentor younger dentists but they don't listen. He is frustrated with them. He is very involved with so many helpful things also and he really is a rock star person on so many levels. Guys like him are rare and I am not looking forward to using another dentist. I think when you have experienced a healer/doctor who cares and has bothered to find better approaches and is not needing to pay for the house on the lake or ______ or paying off huge student loans. Only then can you really see the stark differences in what is and what could be. I have an adult daughter who works in healthcare in admin type of job and I try to influence her on things from a patient's stand point. On many occasions she has been shocked at how the system has failed me. To say her jaw dropped is an understatement. She didn't really understand this until she experienced it herself with me. She now makes sure she helps me when I get too weary dealing with all the B.S. this sector does to patients as much as she can. She knows it can be a mind field out there. I hope if at some time she can improve things for patients she will since she can look back at what she witnessed with me. She will know where to look for the holes in it. Plus she will know how to navigate this for herself and family in the future. Two tips I have now that I have been thru a bad health year. I will recommend that you do not fill out any feedback forms until you are completely done with the issue and have had time to reflect on it. Too many times these entities will send out surveys BEFORE you realize how bad it really was. They act like Amazon sellers who want your review before you even had a chance to use the product! These surveys help support their crappy approaches. They must know this premature feedback is better when it is submitted before you have time to reflect. Second tip is to let the clinic managers know AND corporate know when you have been treated poorly and go into detail about it. Too many times no one speaks up enough to call them out on it all and why they are losing business with their conveyor belt approaches. If nothing else . . . the bottom line does make them pay attention. If you aren't going to have your surgery with them, that brings in a lot of money, when no one gives you your test results from your biopsy then they will care. If that young doctor breezes in and out so fast and you barely have time to talk to them find another one who is listening to you. Sad but true. If a young doctor just ignores your questions and redirects the conversation or scolds you to take the heat off of them, find an older doctor who will make time for you and be honest with you. Keep looking. My daughter says she does not have any loyalty to any health care entity. Nope she bases it on the better doctors and not where they work. Trying to find them is the trick if they even exist anymore. Buy insurance that allows you to pick your doctors since it may make a huge difference when you have serious health crisis. Corporate health care is able to do more things but there is a big trade off with them buying up all the independents and my hope is there is a way to have both down the road. Not holding my breath on that one. You can't live with them and can't live without them at this point in my life. I am actually looking forward to AI doctors since maybe we can avoid pretending they care or are allowed to care due to time constraints and bottom line. Maybe better connections will be made this way? Maybe not,  like Google cars that really don't work well and are not safe. I am sure the bean counters are hoping they can use robots instead and save more money for the admins and stockholders in the future. Won't be really in my lifetime. I am so grateful for forums like this where we can connect and share what we have learned when the system continues to fail us on such a grand scale. Drug companies make more money than oil companies and that is saying a lot. If we can share and find other options maybe they will begin to realize they need to change in order to stay afloat : ) They really have a huge PR problem with folks and the stockholders will be the ones who will be holding the bag ultimately when cures really do become a common reality in so many health care conditions. Patients will have memories like an elephant and will rethink who they buy their drugs from. They will not look kindly on companies like Galderma when they recall all their abuses. The internet makes this information very findable too. The old way of dividing and conquering is a outdated approach and won't work as well. I use cannabis and am finding so many peer reviewed papers that are showing how tumor cell death is happening to many types of cancers like endometrial (Cannabinoid-induced cell death in endometrial cancer cells: involvement of TRPV1 receptors in apoptosis) and prostate (Proapoptotic effect of endocannabinoids in prostate cancer cells) cancers when cannabis is used. So the tide is turning ever so slowly. When I told one oncologist about these papers his lame response was "It is not western science." Well my dentist said I don't care where the science is from as long at it is good." Big pharma has had an easy go of it with regulations preventing research with certain drugs in order to dominate the market place with their half baked drugs. Now that patients are seeking alternatives that are working it is going to be impossible for big pharma to put the genie back into the bottle with congress et al. The states are moving the chess pieces into place for patients if nothing else in order to generate revenue. Thank you so much for responding and I hope others will find this thread of how to work around Galderma's horrible greediness with U.S. patients when it comes to Soolantra and god knows what other drugs they are over charging for. Proapoptotic effect of endocannabinoids in prostate cancer cells.pdf
      • Related Articles Management of Rhinophyma with Radio Frequency: Case Series of Three Patients. J Cutan Aesthet Surg. 2019 Apr-Jun;12(2):136-140 Authors: Tambe SA, Nayak CS, Gala P, Zambare U, Nagargoje A Abstract Rhinophyma is the most common form of phymatous rosacea, typically seen in men. It may appear de novo (without preceding inflammatory changes) or occur in patients with preexisting papulopustular rosacea. It is characterized by slow, bulbous, reddish-purple, painless enlargement of lower two-third of nose with rugose peau d'orange surface resulting from the enlargement of the sebaceous glands and subcutaneous tissue, which does not resolve spontaneously. Though benign, it causes lot of cosmetic and psychological concern. Commonly used treatment modalities include debulking by surgical excision, electrosurgery, carbon dioxide laser ablation, cryosurgery, or dermabrasion. Here we report a case series of three patients with Grade 3 rosacea as per National Rosacea Society grading, treated by radio frequency with good improvement. PMID: 31413484 [PubMed] {url} = URL to article
      • Soolantra at drugs.com costs $389/30 grams    
      • Trillium. Soolantra is a 1% Ivermectin cream in the "soothing" Cetaphil like base according to a post by Galderma. The tricky bit with the 1% liquid solution is that adding it to the cream base will dilute it more so that the resulting mix is less than 1%.  If its already 1% you may actually best use the liquid solution directly onto clean skin.  Try a few drops on the palm and smooth it on the face like a thin facial serum.  The 1% liquid is the right strength to be effective already.  Let it dry.  Optionally you could apply a moisturizer like Cetaphil or whatever you prefer after the Ivermectin solution dries.  That should help eliminate the messy issues with the horse paste. As Brady says, your best bet to make a 1% mix would be to use the Ivermectin powder.  I'm not sure what the Percent strength of the powder is - if its mixed with something it might be less than 100% pure.  The percentage will impact how much Cetaphil cream to mix with the powder.  To be a match for the strength of Soolantra the ratio should dilute the powder to 1% strength when mixed with the Cetaphil. You only have to use the Soolantra once per day at night - that is when the mites are active.  So there shouldn't be any need to wear it under makeup during the day.  That may help with the makeup issue. I totally agree with you about the absurd costs.  Ivermectin has been a generic drug for quite some time and is not that expensive.  By my rough calculations Soolantra has less than $20 worth of Ivermectin per tube.  So selling it for $600+ per tube is obscene.' ElaineA
      • Trillium,  Tom Busby, SD poster extraordinare at RF, mentioned in a post on this subject at RF, "an alternative source of ivermectin, on eBay" which is ivermectin powder. I asked Tom whether this would be a good idea since it seems a lot safer to use the horse paste than have to concoct a paste with grain alcohol and his comment is, "horse paste is fairly expensive for a really tiny amount of product.... I have to assume that someone who has some experience formulating hot emulsions (oil in water) could make a non-greasy cream with this ivermectin powder." There is a formulae based upon weight how much ivermectin to use per pound of body weight.  You mention using the Cetaphil base for your concoction. Have you used Cetaphil? No issues with Cetaphil? Some have reported they cannot tolerate Cetaphil, while others just love it. We have a post explaining the 'basis for vehicle' regarding the use of Cetaphil with Soolantra that should prove illuminating to you. Some prefer the smaller amount of inactive ingredients in horse paste over using the huge amount of inactive ingredients in Cetaphil based Soolantra. There are a significant number of brands of horse paste and each one has similar but different inactive ingredients which are discussed in this thread. We have found two brands that actually list the inactive ingredients, but most brands do not list the inactive ingredients since they are not required to do so.  As for price of Soolantra have you contacted Galderma about the CareConnect program that you may qualify for?  As for the high prices pharmaceutical companies charge in the USA which is related to the medical insurance conglomerate and the universal health insurance issue, yes, it is sad that medical treatment is for the rich, similar to the way justice is given. If you are rich you definitely have an advantage in the USA for justice and medical treatment. But there are some work arounds, where philanthropic organizations help the poor with the money donated by rich benefactors but obviously not enough is given to alleviate these issues. Our non profit organization tries to help in small ways by educating Rosaceans on alternative treatments like ElaineA has done in this thread. Hopefully, you will figure out your own ivermectin solution. Are you confident that using ivermectin actually controls your rosacea? Ivermectin doesn't work for every rosacean. Which brand of horse paste 'leaves a goopy mess on your face at night' ? Have you tried using the horse paste on at night and then washing it off in the AM? Most use Soolantra this way, only use at night. Horse paste is usually only put on at night and then washed off in the AM.  Keep us posted.   
      • I have tried the ivermectin horse paste but it leaves a goopy mess on your face at night.No way to wear it under makeup either. It helps but I also use SAL3 which is a sulfur soap with salicylic acid (3%) which seems to do a better job of keeping the face clean too. I am now wanting to make my own invermectin cream that will not be such a goopy  mess. I have ordered Agrimectin Ivermectin injection 50ml at 1% which is a sterile solution on Amazon for about $28.00. I also picked up some Cetaphil moisturizing cream which is also made by Galderma the same company that makes Soolantra. I plan to mix the Cetaphil cream with the Agrimectin solution and make up my own ivemectin cream since my insurance doesn't cover Soolantra for Rosacea. Soolantra is still like about $660.00 a tube which is just ridiculous and highway robbery. I was given this Soolantra about 10 yrs ago and it was $600.00 then and I had to pay a $60.00 copay for it. Now the insurance companies are not going to pay the monster's (Galderma) game anymore with over inflated prices and I don't blame them. The more you pay them the more they get away with these insane practices. I think if we have more reasonable alternatives they will have to lower the price to get any sales. I have read where others around the world are paying so much less than the $660.00 that is price fixed in the U.S. I feel like Galderma treats American patients like their own parasites the way they have no regard for how most folks can't afford this price fixing they play on us. I also have 2ml syringes and not sure how much Agrimectin Invermectin to use with how much cream to make an effective cream for Rosacea. My dermatologist did try to send me to use www.userphil.com for Soolantra for about $70.00 a tube but this San Francisco start up has horrible reviews and even the BBB has rated them an F! Apparently on the website they used all this high profile company names that wrote articles about them but when the BBB tried to get proof on this or clarification the company never responded. The arrogance of these Silicon Valley investors is just astounding. This vacuum that this price fixing has created is attracting unsavory sharks to enter into the fray. Also if the prescription gets lost in the mail then you can't get a replacement. I know these Silicon Valley investors are smacking their lips over the idea of owning a huge market share of the 300 billion dollar online pharmacy sector business. These investors have over promised and left customers in the lurch. The reviews from customers are just horrible. I think only 54% recommended them on Hiya. A common term reviewers use is liars in regards to their experiences with this online site. I would like to make small maybe weekly batches of my own ivermectin cream if this cream can stay stable for a week. I found using the horse paste helped initially when I had a horrible outbreak but then  I found it created an environment where it wasn't as effective since you have this moist gel on your face that kind of gets all over your hair and pillows and also seems to make the Rosacea revert back a bit and not sure why that is. SAL3 seems to dry out the skin and helps it when the horse paste stops working as well. Thanks for any help you can provide in how to figure out the recipe for ivermectin cream using a liquid ivermectin solution.   
      • One cross-sectional study including 99 women with Frontal fibrosing alopecia presented a higher prevalence of rosacea than did controls. [1] "Frontal Fibrosing Alopecia is the frontotemporal hairline recession and eyebrow loss in postmenopausal women that is associated with perifollicular erythema, especially along the hairline. It is considered to be a clinical variant of lichen planopilaris. Frontal Fibrosing Alopecia has been most often reported in post-menopausal women with higher levels of affluence and a negative smoking history. Autoimmune disease is found in 30% of patients." Wikipedia Frontal fibrosing alopecia may be a co-existing condition with rosacea.  Genetic and Rare Diseases Information Center (GARD)  End notes [1] A Cross-sectional Study of Rosacea and Risk Factors in Women with Frontal Fibrosing Alopecia.
      • Related Articles The Role of IL-17 in Papulopustular Rosacea and Future Directions. J Cutan Med Surg. 2019 Aug 12;:1203475419867611 Authors: Amir Ali A, Vender R, Vender R Abstract Rosacea is a chronic, progressive, inflammatory condition phenotypically subtyped into diagnostic features, major features, and minor/secondary features. There is currently no cure for rosacea, and it carries a significant negative psychosocial burden for afflicted patients. While there are a number of treatment modalities at the disposal of the clinician, clinical experience has suggested a need for updated treatments. The pathogenesis of rosacea is multifactorial; however, this paper will focus on the pivotal role of interleukin 17 (IL-17) in the development and progression of the disease. Furthermore, this paper will explore the mechanism of action of standard rosacea treatments and their effect on different stages of the IL-17 pathway. The standard treatments for rosacea are usually effective in controlling the symptoms of the disease in its mild-to-moderate form; however, their efficacy is diminished in the setting of severe and treatment-resistant rosacea. We hypothesize that IL-17 inhibitors, currently used successfully in psoriasis and psoriatic arthritis, could perhaps be used to treat severe and treatment-resistant papulopustular rosacea in the future; however, clinical trials and case reports will be needed to dictate expanded indications of IL-17 inhibitors. Furthermore, the high cost of IL-17 inhibitors presently prevents their use in disease states other than psoriasis or psoriatic arthritis. PMID: 31402691 [PubMed - as supplied by publisher] {url} = URL to article
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