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  1. rhofade-tube109x60.png.cb5e3ff50c77d8ea3

    "Aclaris Therapeutics, Inc. (Nasdaq: ACRS), a physician-led biopharmaceutical company focused on immuno-inflammatory diseases, today announced it has divested RHOFADE® (oxymetazoline hydrochloride) cream, 1% (RHOFADE) and related intellectual property assets to EPI Health, LLC (EPI Health). The divestiture of RHOFADE is a key component of Aclaris’ recently announced strategic plan to refocus resources on the development of its immuno-inflammatory development programs." GlobalNewswire, Inc, October 10, 2019

    "Allergan developed and brought RHOFADE to market in 2017 after acquiring the drug as part of its 2011 acquisition of Vicept Therapeutics, Inc., a company established by certain members of the current senior management team of Aclaris." Business Insider, October 15. 2018

    Aclaris owned Rhofade and sold it to Allergan and bought it back on October 2018

    aclaris.png.e1cffa49c34bcc6108dd32419656

    The new owner, EPI Health, states on its website, "EPI Health is continually expanding our prescription product line to offer healthcare professionals and patients new and better options to treat skin conditions."

    epihealth.png

    EPI Health's president, John A. Donofrio, joined EPI Health in March of 2019.

    john_donofrio.png
    image courtesy of EPI Health, LLC

     


  2. rosepetals.png

    "All the cases, spreading rose petals on their face, at the end of the treatment show a decrease of the redness as well, and their “facies” exhibit a dark pinkish colour, that correspond to a real flesh-coloured appearance, that reveals a complete status of good health and remission of the syndrome."

    Our Dermatology Online, Letter to the Editor
    Rosacea treated with rose petals: a calembour that affffords intriguing results
    Piotr Brzezinski, Lorenzo Martini

    Since obtaining rose petals is without a doubt an easy task for most rosaceans worldwide, we should be able to easily confirm if this treatment works. Please post your results in this thread. 


  3. One report on 50 patients with rosacea using topical ivermectin concluded, "Ivermectin is an effective treatment not only in moderate-severe papulopustular rosacea but also in almost clear/mild rosacea." [bold added]

    Dermatol Ther. 2019 Oct 03;:e13093
    Real life experience on effectiveness and tolerability of topical ivermectin in papulopustular rosacea and anti-parasitic effect on Demodex mites.
    Trave I, Merlo G, Cozzani E, Parodi A


  4. I was intrigued when I heard about The Planetary Society and requested the latest Form 990 from this 501 c 3 non profit organization, which means that any donation to this non profit is tax deductible for the donor. I received the following pdf: 

    2018 TPS 990 without Schedule B.PDF

    You can review this above yourself and save yourself the time requesting it for yourself. 

    A cursory review of the above Form 990 shows some interesting facts. For example, total revenue (donations) in tax year 2017 was $4,945,266.00 and total expenses were $4,885,055.00 so they spent just about all the donations except for about $60K. See the summary below: 

    summary.png

    What did they spend most of the money on?  What about 'planetary' things?  Actually most of the donations for 2017 were spent on salaries and employees if you go through the expense details which amounted to $2,682,000.00 if you look above. If you will note in the summary, line 5, there are 29 employees of The Planetary Society. That means if you average it out, each employee cost The Planetary Society $92,482.75. Would you like to work for The Planetary Society? Remember that each employee is paid with donations from the public. However, you should note that the six board of directors received the highest amount in salaries and compensation. 

    The salaries for six of the board of directors amounted to $911,122 which is 34% of the total expenses on salaries listed on 15 above which you can view below in detail:  

    officers_salaries.png

    I challenge any of you to find in the Form 990 provided for free from The Planetary Society to find what this non profit organization spent on 'planetary' or 'space' items?  I found one grant they spent in the amount of $98,759 (line 13 in the summary above) and for its Lightsail Project which is listed below in the amount of $123,000 spent on an independent contractor, Ecliptic Enterprise Corporation (see below). 

    independent_contractors.png

    So the only two items I could find that remotely relates to 'space' are one grant and its one project which totals $221,759.00. That means for every dollar donated to The Planetary Society about 4 cents is actually spent on what its mission statement is about. The other 96 cents of a donated dollar is spent on operating the organization and most of the expense is on salaries and employees (54%). This is not uncommon practices for non profit organizations which is the theme of this entire thread. If you take the time and effort to receive a Form 990 from any 501 c 3 that is required to publish one that makes it available to anyone who asks, you will find that most non profits spend very little on its 'mission.' 

    One other item of note are the assets listed by this non profit organization. When you bring in millions of donations each year, it is possible that the non profit organization accumulates assets. Note below what is listed in the Form 990: 

    assets.png

    The total assets are significant. In other words, if this organization ever decided to dissolve, it could sell the assets and the organization is required to disclose where all the money from those assets went. But most people simply don't care how non profit organizations spend their donations. Especially when it comes to rosacea non profits. Are you surprised or do you even care about any of this?


  5. On 9/22/2019 at 3:56 PM, Erin said:

    I have used horse ‘paste’ (more like a gel) multiple times when my acneic rosacea has flared, along with bouts of overly greasy skin and flakiness.....So, here is my thumbs-up/a-okay for DuraMectin Apple flavored horse paste—applied topically AND/OR ingested orally, by your body weight, to clear up rosaceaic acne. Cheers, Erin

    Thanks Erin for your post. Many, many others have reported great success with horse paste (gel). Without a doubt, Galderma and other pharmaceutical companies will note this success and start producing 1.87% ivermectin in a gel form without as many inactive ingredients to compete with the success you and others are having, especially a cheap version that could get FDA approved for human treatment. As for taking ivermectin orally, we have a thread on using ORAL IVERMECTIN FOR ROSACEA which is separate from the one you are posting in here which is about topical horse paste treatment. Really appreciate your post very much. 


  6. 61kNd3+kzBL._SY879_.jpgcrotamiton.png

    A new paper published in the September 2019 issue of The Journal of the European Academy of Dermatology and Venereology states that treatment using benzyl benzoate and crotamiton has been shown to decrease demodex density counts and improve demodectic rosacea. Benzyl Benzoate is a medication and insect repellent also used to treat scabies and lice. Crotamiton has been used to treat rosacea for sometime now and has traditionally been used to treat scabies. For more information


  7. tapatalk.pngtapatalkgoldpointscryptocurrency.png

    We are pleased to announce that the RRDi is sponsoring a PRIVATE Tapatalk Rosaceans Forum at the following url: 

    https://rosaceans.org

    We hope you enjoy using the new forum. The Tapatalk Rosaceans Forum is a private forum if your prefer privacy over our Invision Community Forum (the forum you are currently using) which is a PUBLIC forum. 

    The private rosacean Tapatalk forum uses Tapatalk Gold Points for those who so choose to use this reward system, but you are not required to purchase gold points since the forum is sponsored by the RRDi and has removed all advertisements and it is a free forum. You may purchase gold points only if you prefer to do so and are under no obligation to do so since we are sponsoring this new Tapatalk Forum. Let us know how you feel about this new PRIVATE forum by posting in this thread. 

    We will sponsor this for a limited time to see if the private Tapatalk forum is popular or not?  Let us know your thoughts on the rosaceans Tapatalk private forum in this thread, please? 

     


  8. 4 hours ago, andy doyle said:

    I'd really like to hear about the oral ivermectin Rory, I am living in Ireland and I've also wondered about the demodex brevis after Soolantra (9 months) failed to clear my skin. Oral Ivermectin is one of the few things I still haven't tried. I've pulled eyelashes out of my eyebrows and some of them looked clear enough, other ones has a prominent hair follicle and a a weird gooey substance which I thought might be an indicator of demodex brevis, I have some redness over my eyebrows and in the oily T-zone, outside of the oily T-zone my skin is fairly clear.

    Andy,
    You can learn about oral ivermectin with this post. You should be able to view demodex with the naked eye but dermoscopy or a cheap microscope makes viewing easier. This post explains about viewing demodex

    A Russian paper on demodex had this point concerning demodex brevis: 

    (7) Demodex brevis not as significant as Demodex Folliculorum

    "In patients with severe manifestations of the condition (pustulous and infiltrative- productive forms of rosacea), the species of the mites Demodex folliculorum (P<0.01) is more often detected. Demodex brevis is found in mild forms of the condition and in healthy people, without showing signs of parasitism."

    "When Demodex brevis is found, given its weak possibility of parasitism, treatment with antiparasitic drugs is not indicated."

    More information


  9. Non-Profit-vs-Not-for-Profit-Organisation.jpg

    The internet certainly has changed over the years. In 2004 when the RRDi was founded, the rosaceans then really wanted to become united and do something about rosacea. Today, all they want to do is gather together in social media private groups like Facebook, Instagram, Twitter, and Reddit and discuss what they do about rosacea and do absolutely nothing about uniting together into a non profit organization for rosacea and do something about this disease. There are basically four non profit organizations for rosacea (see Other Non Profit Rosacea Organizations). So does anybody care what a non profit organization should be doing about rosacea?  What are your thoughts? Do you know anything about what the four non profit organizations are doing about rosacea? Would love to discuss this or if you have questions about any of this, ask? 

    For example, what is the difference between a nonprofit and a not-for-profit organization? Yes, there is a difference. Wikipedia explains, "Nonprofit and not-for-profit are terms that are used similarly, but do not mean the same thing. Both are organizations that do not make a profit, but may receive an income to sustain their missions. The income that nonprofit and not-for-profit organizations generate is used differently. Nonprofit organizations return their income back to the organization if they generate extra income. Not-for-profits use their excess money to pay their members who do work for them. Another difference between nonprofit organizations and not-for-profit organizations is their membership. Nonprofits have volunteers or employees who do not receive any money from the organization's fundraising efforts. They may earn a salary for their work that is independent from the money the organization has fundraised. Not-for-profit members have the opportunity to benefit from the organization's fundraising efforts."

    However, whether an organization is a nonprofit or a not-for-profit based upon the above paragraph can get really fuzzy and the lines are not easily drawn. 


  10. 8 hours ago, Trillium said:

    Cordain is one of the advisors here and that is enough  to have me remove my postings here.

    Sorry to hear that since I have enjoyed your posts. Dr. Cordain wrote the Paleo Diet, which is a high protein diet, similar to my Rosacea Diet, the Atkins Diet, Protein Power by Drs. Eades. I recall you wrote something in this thread about Dr. Cordain regarding his use of references?  I invited him to volunteer on the RRDi MAC because there are many rosaceans who have posted that eating high protein and avoiding carbohydrate, especially sugar improves rosacea. Dr. Cordain rarely posts here, as you will find out, most of the MAC members rarely post since they are all living very busy lives. 


  11. I have tried the Soolantra and posted my results here. I have tried the Durvet horse paste and prefer it over Soolantra. I like the horse paste 'gel' better than the oily 'cetaphil' Basis for the Vehicle in Soolantra. Hope you have good results with Soolantra, since many do report it works for them. 

    As for your eyes, many have reported that the Cliradex towels work. As for shampoo there are a number of tea tree oil shampoos that many have reported works for them, i.e., Ovante or DS Shampoo, and there are many others. 

    Ivermectin generally takes 12 weeks for clearance, after that, you can figure out your own maintenance routine, hopefully, one or twice a week. 

    As for the human microbiome, there are ten times as many virus in a human as there are bacteria. The Russians and Eastern Europeans have traditionally looked into using bacteriophage (virus) for over ninety years and are way ahead of Western Medicine into research on this subject, using bacteriophage as an 'antibiotic' in treatment of disease. The Western bias of focusing on bacteria as the culprit of everything and dismissing all the other microbes besides bacteria clouds the health issue. For more information on the human microbiome


  12. In 2019 the ROSCO panel collaborated again with a paper published in the British Journal of Dermatology and concluded: 

    "The current survey updates previous recommendations as a basis for local guideline development and provides clinical tools to facilitate a phenotype approach in practice and improve rosacea patient management."

    The original panel lost one member, Y Wu from China, and has gained five new members, J. Del Rosso, R.D. Granstein, G. Micali, E. Tanghetti and M. Zierhut. Here is the list of 2019 ROSCO Panel: 

    L.M.C. Almeida, Brazil
    A. Bewley, United Kingdom
    B. Cribier, France
    J. Del Rosso, USA
    N.C. Dlova, South Africa
    R.L. Gallo, USA
    R.D. Granstein, USA
    G.Kautz, Germany
    M.J. Mannis, USA
    G. Micali, Italy
    H.H. Oon, Singapore
    M. Rajagopalan, India
    M Schaller, Germany
    M. Steinhoff, Ireland
    J. Tan, Canada
    E. Tanghetti, USA
    D.Thiboutot, USA
    P. Troielli, Argentina, 
    E.J. van Zuuren, Netherlands
    G. Webster, USA
    M. Zierhut, Germany

    2019 Total ROSCO Panel Members 21


  13. 1 hour ago, Trillium said:

    Ben Goldacre is the Brit from Oxford who has been taking on big pharma regarding their sneaky practices. He talks about placebo affect and it is from his presentations I learned about this whole placebo issue for drug approvals. He also takes on these medical journals too. Clinical trial transparency is what he has been pushing for. Here is a very popular TED presentations he did about 7 yrs ago called What Doctors Don't Know About the Drugs They Prescribe:

    https://www.ted.com/talks/ben_goldacre_what_doctors_don_t_know_about_the_drugs_they_prescribe

    Here is another presentation he did the year before on TED titled Battling Bad Science:

    https://www.ted.com/talks/ben_goldacre_battling_bad_science

    He talks about prescribing in the past based on not being given all the negative outcomes and harming patients this way:

    https://www.youtube.com/watch?v=E28_qXeP9bk

    Doctors and patients have both been victims of the negligent practices these big drug companies have been doing for a very long time.

    I can't find it right now but he was part of this presentation to British politicians where he was warning them of the abuses these big drug companies continued to do. The whole reason for this meeting was to convince politicians to make these drug companies provide ALL outcomes for drug approvals. It was interesting since the drug companies hired older maybe retired doctors to speak for them. After listening to all concerned it was clear these drug representative doctors were complete sell outs for the drug companies and they made a lame attempt at presenting the drug companies position on leaving out important data in their publications for drug approvals. It was clear to me that Ben had made a very compelling argument for more transparency with the drug data.

    Ben has been very outspoken taking on these drug companies and rightly so. It makes you want to avoid all drugs from companies if they are not required to publish all outcomes since there is no way doctors can be sure the drug is right or safe for a patient with so many unknowns.

    I am showing good results so far with the Agri-Mectin. I was also prescribed the Metronidazole topical cream for day use which had a reasonable cost of about $14.00. No one explained to me how these work with ivermectin. They just give you a prescription and send you on your way. What I am thinking is the ivermectin begins annihilating the mites on the face. I think it may take some time with eggs that still need to hatch too. In the meantime as these buggers are dying off from ivermectin and/or just end of life span the bacteria from them breaking down in the pores cause an inflammatory response. This is probably why for years I was told Rosacea was an autoimmune condition but in fact is just an infestation is all. The Metronidazole probably reduces this inflammatory response when this external antibiotic comes in contact with this bacteria and killing the bacteria caused by rotting demodexes in the pores. So it is a one two punch to clean up the face quicker from the looks of it. 

    It is such a shame that so many end up getting disfigured from bad Rosacea flares when it can be so easily mitigated cheaply. I have one scar from the last big flare. I could not for the life of me get into see a dermatologist in reasonable amount of time. I called all over and I had 1 to month wait to get in. Ridiculous!  I really didn't even consider going to an emergency clinic since didn't consider it a real emergency and the cost would have been high and maybe they wouldn't know how to deal with my other autoimmune condition is how I felt. When you have autoimmune conditions you are used to getting the classic shrugs from doctors. I was also changing insurance plans too and this also made for problems since you get into see these doctors quicker if you get a referral and that whole game is a bigt disgusting too. My new insurance didn't even require me to have referrals anyway but some doctor's offices still require referrals anyways. (I pay extra for this better insurance plan but it doesn't always provide me better consideration. That is when I began finding solutions on my own. I also at this point still believed Rosacea was still an auto immune condition that no one had a real solution for).

    As I was using the horse medicine version of ivermectin gel it took some time to really see improvement since it was so bad. I literally had a few scabs from the infestation or inflammatory response. I was trying to be so careful and well one scab just came loose and I have a small indented scar from it. I felt like the medical community and the drug companies both let me down and I am sure others have felt the same way. Even when you have good insurance it doesn't mean you will get the care you need. This is how even the insured get fed up with the way things are done. I give them a C- for the way health care operates.

    Years ago women had to go to the doctors for vaginal yeast infections to get a topical antibiotic ointment. It was costly and it happens to some women regularly. Plus you would have to wait to get into see the doctor and they created unnecessary road blocks this way. Then rational minds finally won the day and now this antibiotic topical doesn't need a prescription and woman can buy it over the counter when they need it. My hope is that ivermectin will become well known to patients and will get the FDA approval to be sold for Rosacea at a reasonable cost like over the counter vaginal yeast  infection creams. It makes me wonder if these vaginal creams would work in a pinch in place of Metronidazole if you can't get into see a dermatologist in a reasonable amount of time?

    I also wonder if there are safer products than a pesticide (ivermectin) to put on your face that will get rid of demodex infestations. Much like how researchers are working on using good bacteria to over run bad bacteria instead of using antibiotics that wipes out the good with the bad. Or like fisheries do and put sterile Muskies (fish) into lakes to eat up the invasive non native Squaw fish who decimate native fish species.

    The ivermectin apparently kills the mites. The metronidazole is an antibiotic and helps heal any bacterial infection that you may be experiencing. Sometimes dermatologists also prescribe taking oral antibiotics, i.e., doxycycline, along with the ivermectin, the gold standard that Galderma uses. I am happy for you that your ivermectin/metronidazole treatment is improving your skin. It usually takes twelve weeks for clearance and after that using a maintenance treatment, say two times a week or when you feel it is necessary. Thanks for the links to the TED talks. 

    The Russian study on demodex is illuminating as well as the demodex update post

    As for vaginal yeast infections, antibiotics don't work well on such, but anti-fungals do. There simply isn't much research on anti-fungals and rosacea, or for that matter the rest of the skin microbiome. Bacteria only takes up a small percentage of the human microbiome, yet research has been overwhelming in favor of looking at bacteria for over a hundred and fifty years which focuses on antibiotic treatment. This bias toward bacteria tends to ignore other microorganisms, i.e., virus, fungus, archea,  protozoa, helminths, demodex, and the list continues to grow. 

    Candida albicans (a fungus or yeast) and rosacea have been linked in at least one research paper.


  14. On 8/16/2019 at 10:39 AM, Trillium said:

    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.

    You may find it interesting why the RRDi, the first non profit organization for rosacea founded by rosacea sufferers, was formed. A post on rosacea research in respect to funding helps get a clearer perspective. 

    Currently there are four active non profit organizations for rosacea: 

    National Rosacea Society (NRS) 501 (c) (3) non-profit
    (Spends 60% of its donations on two private contractors owned by the director/president of the NRS, Sam Huff, and 10% of its donations on rosacea research)

    American Acne and Rosacea Society (AARS) 501 (c) (3) non-profit
    (Spends most of it donations on conventions for its prestigious members and very little on rosacea research)

    Acne and Rosacea Society of Canada
    (Absolutely no financial public records so we have no data on any rosacea research)

    The RRDi, which is where you are now. 

    You mention cancer, which as you point out receives millions, if not billions of dollars in donations, and very little is spent on cancer research if you actually check how each non profit organization for cancer spends its donations. This post explains where a few cancer organizations actually do spend a significant amount on cancer research, such as Dana Farber and The Breast Cancer Research Foundation, but typically, most cancer non profits, i.e., The American Cancer Society (Group), spend very little on cancer research. For example the The American Cancer Society (Group) received almost a billion dollars in donations and spent less than one percent of this on cancer research. Most people don't care about any of this.  

    The American Academy of Dermatology receives millions of dollars in donations and in 2015 spent 3% of the total on research, very little if any on rosacea research. 

    The sad point of all this is that Rosaceans simply don't care how non profit organizations for rosacea should conduct themselves. They don't care about coming together and trying to do their own research. They continue to donate to the NRS who spends very little money of its donations on rosacea research, about ten percent, and spends the vast majority on private contractors owned by the president/director of the NRS. C'est la vie. 


  15. 4 hours ago, Trillium said:

    I was using the Durvet Invermectin Paste:

    https://www.amazon.com/Ivermectin-Paste-Dewormer-6-08g-Flavor/dp/B000HHLWPI

    I would buy mine from a local animal feed store called Wilco for even less than Amazon sells it. But it was on Amazon I found ivermectin at all. The reviews from folks who are using it for Rosacea sold me on the idea.

    I just tried the Agri-Mectin last night. I took a syringe and was able to take just enough out of the vial to put on my fingers to apply to my face. It dried on my face nicely so I avoided all the gooey gel feeling with this method. I think this maybe my best work around. I can see this vial of 50ml will last awhile too. It is 28.00 on Amazon but will look to see if I can find it locally for a bit cheaper if possible. If not, I still think this is a way more affordable way to go over Soolantra.

    Yes, I think this is the best method you are trying. Try this for at least four weeks and post back your results. 


  16. On 8/15/2019 at 6:19 AM, Trillium said:

    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. 

    You may want to try the Agri-Mectin gel on your face at night and let it dry before you put your face on the pillow or bed. In the am wash it off. See if this works for you? 

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