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Hi Mike, These companies rarely communicate with personnel outside of the bio-medical community and when they do, the information release is limited, and the medical jargon often must be translated. Just look at the veil that has kept SansRosa in the dark for nearly nine years. Great news though -- I've been corresponding with several of the key Research and Development people at Signum Biosciences including the Chief Clinical Research Scientist and the VP of Corporate Development for quite some time.... I've been helping them catch up to speed on the underlying molecular mechanisms of rosacea and emphasizing the need for newer and better rosacea treatment. We had a very productive conference meeting today that lasted almost 90 minutes. I continue to be flabbergasted by the number of biotechs and pharmaceutical companies that still believe rosacea is basically cured. Most physicians, specialists and companies that would be perfect to collaborate with are disillusioned by misleading rosacea literature circulating out there in journal articles, advertisements, pamphlets and doctors offices. Discussions that take place at the National and International American Academy of Dermatology Meetings regarding the state of rosacea downplay every facet of our disorder... Signum Biosciences was under the clear assumption that they would have to target the antiaging market because "the rosacea market is basically closed with no need for better treatment" and the disease is basically "cured for the majority of sufferers". This is a terrible message and it has truly affected our rosacea advancements the last 5 years at least -- nothing of any consequence has come to fruition and to highlight this point, after 60 years of rosacea research we have one FDA approved oral medication for rosacea... ORACEA. $179 at CVS for 40 mgs of doxycycline. BTW, just purchase 50 mgs of generic doxy... same stuff, no bacterial actions. Every derm in the US gets Dermatology Times and The Journal of the American Academy of Dermatology with dozens of leaflets inserted by Galderma. Galderma is spending millions of our NRS money to finance their own advertisements! Brady has the numbers and it is translated as "Rosacea Awareness" because they don't advertise their products... their legal team has inserted a web site, an email contact, and a toll free number... conveniently. To ths day Galderma utilizes one terrible study by a Dr. Dahl (a physician getting paid by Galderma to perform the study).... to sell their products. The title to this earthshattering article is "Metronidazole Remains Remission in Rosacea" and even ignores the fact that all rosacea sufferers were insructed to "avoid all rosacea triggers as one of their primary treatment protocols". Even worse, nearly 30% dropped out of the initial study because they did not get better. That is a very large number. Geez. We need to do a 180 on the release and disseminaton of rosacea information and we can do this very easily. Gather 4 writers (a scientist, physician, layman, and PR specialist) and develop our own pamphlet to be distributed by the NRS to doctors offices, national meetings and placed on the NRS home page. You may not realize this, but we are in charge of the NRS. All of their tens of millions of dollars comes from rosacea sufferers. We should also write a professional and respective letter to the NRS Chair as they have failed at their jobs for nearly 8 years. This is not harsh, it is true and it is in our right to ask for changes or even removal. Every year I review major grants (not $25,000 grants, but $750,000 and above) for the American Heart Association and the American Diabetes Association. We get together as a group and decide which studies get funded. If the patients and contributors stopped donating to the American Heart Assocation because we did a poor job and were sent a letter on the necessity for change... trust me... this would be reveiwed at every single level up to the head honcho. We have the same power over the NRS. Stop donating or request monies only for research that is geared towards evaluating treatment. No one knows that we can do this. Everyone always discusses the poor treatments and the physicians who are always dumbfounded... well here is the simplest way to reach every single derm and have an outside committee review the NRS... because they have failed us. Stop telling other competing companies that rosacea is "nearly cured". Please stop ommiting the part where we have to avoid every single trigger and the significant daily impact of trigger avoidance on our quality of life. I would suggest that Brady and his 300 gladiators publish an article to put rosacea in the proper spotlight. Back to the good news: Anyway, Sgnum is sending clinical samples of Arazine for me to distribute with my IU Med. Dermatologist. We will also evaluate if there is a chance for collaboration or US based multicenter clinical studies that we can help out with. They are releasing Arazine to the Japanese market the end of June and plan on releasing it into the US within 3 to 5 months. They are moving full throttle on the SIG990 prescription topical rosacea treatment which should address skin inflammation and neutrophil-induced vascular hyperreactivity, vascular damage and upregulation of iNOS (the most potent inflammatory dilator in rosacea skin). The active ingredient is extremely small (with a molecular weight of 367) and thus should penetrate deep into rosacea skin without the use of harsh penetration enhancers and phospholipids. They are sending me a stack of information to put together to review... and possibly publish for the Journal of Investigative Dermatology my colleague. It is time to stop funding an organization such as the NRS that has failed to produce anything fruitful after being given ten of millions of dollars by hard-working rosacea sufferers. Galderma's only achievement has been increased rosacea exposure which is a win-win for them because that increases the sales of their 5 rosacea products. Notice how they don't advertise a single product on these publications but add an email, physical address and toll free number that conveniently goes to Galderma. Their legal department did a great job on that end around... I wonder if any of our NRS donations went to funding their legal department? Signum seems to be fully on board now, they understand the true breadth of the rosacea market, they are excited about their product and potential (.... I am just as excited after learning about the molecular mechanisms behing the G Protein Modulation, their cutting edge facility, and their proven G protein treatments) On the heals of this new information, Signum Biosciences has also added two more products into their pipeline this week for OTC inflammatory skin conditions that should benefit us. SIG1176 SIG1072 You are absolutely right Mike, these products do show the greatest potential for rosacea treatment in a long time and target G Proteins (the smartest treatment approach) with a very simple prenyl peptide. The SansRosa Horse has a broken leg. It's time to take SansRosa out back to the barn and gently put it out of its misery. G protein treatment and modification is straightforward and has been extensively tested so I do not forsee any delays in the release this summer and I would imagine safety testing of the clinical compound and the three phases of human trials would move through the medical testing board quickly and without incident. I hope that helps Mike!
__________________
_ Best, Geoffrey Dr. Geoffrey Nase Ph.D: Neuro-Vascular Physiologist Email: drnase1000@hotmail.com Bibliography: http://drnase.com All posts are for informational purposes only. Please visit our Home Page to view our Medical Disclaimer. |
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Awesome stuff. It looks Signum Biosciences "gets it."
The NRS is a joke. They are big proponents of trigger avoidance, which to me is laughable. I am amazed on the little attention this disease gets. If someone came out with a topical that got rid of redness/flushing they would be multi millionaire overnight. With ALL the docs around the world you have to figure someone would come up with something. Keep up the good word Dr. Nase. |
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I can't wait for the release of that topical. I've given up on IPL treatments because they are too expensive and the results don't last longer than 2 months for me. I've probably had around 50 over the past 5 years. The only way a get by is 2mg of klonopin, .5mg clonidine and 30mg of buspar. I have to stay heavily medicated to survive my job and not be burning and horribly red all the time.
OK, so back to the real problem being the NRS. Why don't we start a website revealing these issues with the NRS to put donors on notice of how the money is really being spent? If they are putting out the message that rosacea is cured for the financial benefit of themselves, I see a law suit waiting to happen. What can I do personally to shake things up? I knew there were issues with the NRS but I didn't know that they are still getting a lot of donations. -Mark |
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What are they talking about? Rosacea symptons are destroying lives and are not managed at all. And our suffering is really downplayed as "cosmetic". I hope you can put that right to companies as much as possible!
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Dr. Nase, What do you suggest we do? Would a letter to the NRS and their staff have any real effect? What about a Blog or website? Walked into my derm's office last week and there were 7 Galderma pamphlets on the wall magazine holders and the reception desk. He is now handing out three small tubes of Metrogel and Oracea. The pamphlets showed red faces on one side and happy smiling faces on the other side. This is very wrong. Maybe just ask them to tone it down and state that those with very mild cases may respond to this treatment. That might be a good starting point? Any thoughts? |
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Aaron, I would recommend focusing on modifying what type of grants are funded. What I mean is that our disorder is the only inflammatory skin disorder that has one major pharmaceutical company developing a non-profit organization. So, they cannot test their own products... and thus other products in order to grade their effectiveness. Kind of shooting ourselves in the foot. It's been 9 years now and we dont have one single treatment that has been developed as a result of NRS Grants.
__________________
_ Best, Geoffrey Dr. Geoffrey Nase Ph.D: Neuro-Vascular Physiologist Email: drnase1000@hotmail.com Bibliography: http://drnase.com All posts are for informational purposes only. Please visit our Home Page to view our Medical Disclaimer. |
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Our G-Protein treatments are upon us.
We shall soon see how our first rosacea specific G-Protein treatment fairs after I test this on rosacea sufferers with help from Dr. Bitter.
__________________
_ Best, Geoffrey Dr. Geoffrey Nase Ph.D: Neuro-Vascular Physiologist Email: drnase1000@hotmail.com Bibliography: http://drnase.com All posts are for informational purposes only. Please visit our Home Page to view our Medical Disclaimer. |
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