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  • Message from the Founder - Volunteers and Transparency

    director.pngbrady_tn.jpg

    In January 2005 the Board of Directors chose me as the director of the RRDi, and Warren Stuart as the Assistant Director. In 2010 we were again voted to serve another five years on the board. Warren was instrumental in forming and establishing the RRDi, helping out with our web site and setting up our member forum. Warren also established a sister site relationship with his Rosacea Forum. Sadly, Warren passed away in 2012 (for more info click here). In 2015 I was again voted to serve another five years on the board as director. 

    You might be interested in a more detailed history of the RRDi

    An article was written on why I formed the RRDi. You should carefully investigate the other non profit organizations for rosacea and compare how they are run with the RRDi. The big difference is that this non profit is run with a volunteer spirit by rosacea sufferers. 

    Volunteers
    What other non profit organization for rosacea is run by volunteers? This is the driving force behind this non profit organization for rosacea founded by rosacea sufferers. 

    The one thing you can be sure of is that any donations will NOT be spent on private contractors or salaries at this point since everyone associated with the RRDi are volunteers. This can be done because of the volunteer spirit with which this institute was set up. Can you help? When you join, in the comment box let us know you want to volunteer. If you simply join that would increase our numbers. Any small donation helps us keep going. However, volunteering is what makes this non profit different from the other rosacea non profits (read this post). 

    A database of research suggestions is being accumulated which you may access or make suggestions by clicking here.

    The RRDi is the only non profit that allows rosaceans any say in determining who is on the board of directors. The other non profits are closed board of directors and if you aren't happy with the direction there is nothing you can do about it. Whatever the direction the RRDi takes, whether to research the cause, or the cure, or whatever is done you can at least know that rosaceans had a say into what research the RRDi will engage in. The board of directors have the final say on this.

    Transparency
    We believe in transparency. How the RRDi is run is public knowledge. You can clearly review all our financial records. All the other non profits keep their articles of incorporation a deep secret. Their financial records are cryptically revealed in only an IRS Form 990 report that is confusing and difficult to read. That is a big difference. You have a say if you join and become a corporate member. You can vote who is on the board of directors. Can you do that with any other rosacea non profit organization? I have always felt that rosaceans should have a say in what is being done and not leave that up totally to those who may have their own agenda or leave the decision to private contractors. The MAC at the RRDi is just that; a medical ADVISORY committee. The board of directors who are rosaceans make the final decision on the research and all matters. And if you desire, you as a rosacean, if you join the RRDi as a corporate member, can determine who serves on the board of directors.

    Non Profit Organization

    501 (c) (3) tax-exempt status has been approved by the IRS effective June 7, 2004. With such a legacy, you can see the RRDi is a solid non profit organization for rosaceans you can trust. Please join

    Brady Barrows
    RRDi Founder

     



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  • Posts

    • MENLO PARK, Calif., July 27, 2017 /PRNewswire/ -- BioPharmX Corporation (NYSE MKT: BPMX), a specialty pharmaceutical company developing products for the dermatology market, today announced that a panel of prominent dermatologists will discuss BPX-01, a unique topical hydrophilic gel formulation of minocycline at the 2017 AAD Summer Meeting tomorrow. BPX-01 is an investigational drug for the treatment of acne and rosacea. Summer AAD Panel to Discuss BPX-01 for Acne and Rosacea, NEWS PROVIDED BY BioPharmX Corporation, Cision, PR Newswire 
    • Rosacea is considered the UK’s most common skin complaint. But what causes its red, itchy patches and how can you get rid of it? Why your diet could be causing rosacea, By Carla Challis, BT Carla doesn't mention sugar or carbohydrate as a rosacea trigger. The NRS still doesn't list sugar or carbohydrate as a rosacea trigger and articles like this one parrot the NRS trigger list. 
    • Rosacea’s red cheeks and nose aren’t caused by heavy drinking, and nor is it down to poor hygiene. We dispel the myths surrounding this common skin condition. Rosacea: the causes and triggers of the skin condition explained, By Carla Challis, BT
    • Phenotype 6 - Ocular manifestations

      Ocular rosacea is common but often not recognized by the clinician.[1] It may precede, follow, or occur simultaneously with the skin changes typical of rosacea. In the absence of accompanying skin changes, ocular rosacea can be difficult to diagnose, and there is no test that will confirm the diagnosis. Patients usually have mild, nonspecific symptoms, such as burning or stinging of the eyes. A sensation of dryness is common, and tear secretion is frequently decreased. [2] Mild-to-moderate ocular rosacea (including blepharoconjunctivitis, chalazia, and hordeola) occurs frequently, whereas serious disease with the potential for visual loss, such as that which results from keratitis, occurs rarely.

      Ocular problems occur in at least 50 percent of patients with rosacea. [3] "Although considered a skin disease, rosacea may evolve the eyes in 58-72% of the patients, causing eyelid and ocular surface inflammation. About one third of the patients develop potentially sight-threatening corneal involvement. Untreated rosacea may cause varying degrees of ocular morbidity." [14]

      One report said, "Patients with rosacea have thinner corneas, which could be attributed to the observed deteriorated tear function parameters." [12]

      For images of Ocular Rosacea click here:

      http://goo.gl/ESG4n

      Links to get you started [5]

      Dry Eye: Awareness, Diagnosis, and Management

      All of the ocular rosacea articles at rosacea news

      Ocular Rosacea: Dr. Eric Jones, MD

      Ocular Rosacea: Dr. Mark J. Mannis, MD

      Ocular Rosacea: Curse of the Celts and Celebs, Heather Potter, MD, University of Wisconsin, School of Medicine and Public Health

      Treatment

      Treating ocular rosacea (from the AAO)

      Topical Cyclosporine Proves Beneficial For Ocular Rosacea [6]

      Avermectin Milbemycin Eyewash for Ocular Rosacea [7]

      Might consider demodex mite treatment. [8]

      Terpinen-4-ol (T4O) Pass [11]

      One report states, "We suggest that a clinically acceptable dosage of PRP provides the ocular surface with the components necessary to restore normal cellular tensegrity and provides a foundation to eliminate the recurrence of the inflammation associated with DES [Dry eye syndrome]." [13] Cliradex [15] Optimel [16]

      Diagnostic Test 

      There may be a clinical diagnositic test now available for ocular rosacea. [4] One paper suggests, "The abundance of highly fucosylated N-glycans in the control samples and sulfated O-glycans in ocular rosacea patient samples may lead to the discovery of an objective diagnostic marker for the disease." [9] Another paper suggests, "The high abundance of oligosaccharides in the tear fluid of patients with rosacea may lead to an objective diagnostic marker for the disease." [10] "There is not yet a diagnostic test for rosacea. The diagnosis of ocular rosacea relies on observation of clinical features, which can be challenging in up to 90% of patients in whom accompanying roseatic skin changes may be subtle or inexistent." [14]

      End notes

      [1] Arch Dermatol 1997;133:89-90.[CrossRef][iSI] [Medline] 
      Ocular rosacea: current concepts and therapy.
      Kligman AM

      [2] J Am Acad Dermatol 1992;26:211-214.[iSI] [Medline]
       Schirmer testing for dry eyes in patients with rosacea.
      Gudmundsen KJ, O'Donnell BF, Powell FC. 
      [3] Rosacea: A Common, Yet Commonly Overlooked, Condition
      B. WAYNE BLOUNT, M.D., M.P.H. and ALLEN L. PELLETIER, M.D.
      Am Fam Physician. 2002 Aug 1;66(3):435-441.

      [4] Glycomics Analyses of Tear Fluid for the Diagnostic Detection of Ocular Rosacea
      Hyun Joo An, Milady Ninonuevo, Jennifer Aguilan, Hao Liu,‡ Carlito B. Lebrilla, Lenio S. Alvarenga, and Mark J. Mannis
      J. Proteome Res., 2005, 4 (6), pp 1981–1987, October 6, 2005, American Chemical Society

      Trail of Tears May Lead to the First Diagnostic Test for Ocular Rosacea
      Ocular Rosacea Test
      Updated: 6/21/2006 9:16:46 AM Dental Care & Health Care Articles

      [5] Link list courtesy of David Pascoe

      [6] Topical Cyclosporine Proves Beneficial For Ocular Rosacea
      Skin and Allergy News, Medical Dermatology
      BRUCE JANCIN, Skin & Allergy News Digital Network

      [7] Patent applied for by Galderma
      David Pascoe's comment on the above patent

      [8] In vitro and in vivo killing of ocular Demodex by tea tree oil.
      Gao YY, Di Pascuale MA, Li W, Baradaran-Rafii A, Elizondo A, Kuo CL, Raju VK, Tseng SC.
      Ocular Surface Center, 7000 SW 97 Avenue, Suite 213, Miami, FL 33173, USA.
      Br J Ophthalmol. 2005 Nov;89(11):1468-73.

      [9] Glycomic analysis of tear and saliva in ocular rosacea patients: the search for a biomarker.
      Vieira AC, An HJ, Ozcan S, Kim JH, Lebrilla CB, Mannis MJ.
      Ocul Surf. 2012 Jul;10(3):184-92. Epub 2012 May 3.

      [10] Glycomics Analyses of Tear Fluid for the Diagnostic Detection of Ocular Rosacea
      Hyun Joo An, Milady Ninonuevo, Jennifer Aguilan,Hao Liu, Carlito B. Lebrilla, Lenio S. Alvarenga,and Mark J. Mannis
      J. Proteome Res., 2005, 4 (6), pp 1981–1987, DOI: 10.1021/pr0501620, Publication Date (Web): October 6, 2005

      [11] In clinical trials as of August 2012:
      Demodex Blepharitis Treatment Study (DBTS)

      [12] Can J Ophthalmol. 2012 Dec;47(6):504-8. doi: 10.1016/j.jcjo.2012.07.009.
      Central corneal thickness in patients with mild to moderate rosacea.
      Onaran Z, Karabulut AA, Usta G, Ornek K.

      [13] Optometry. 2012 Mar 30;83(3):111-3.
      Dry-eye--is inflammation just the tip of the iceberg?
      Jarka ES, Kahrhoff M, Crane JB. [14] Arq Bras Oftalmol. 2012 Oct;75(5):363-9. Ocular rosacea: a review. Vieira AC, Höfling-Lima AL, Mannis MJ.   [15] One report on Cliradex is from yoegan on 5th April 2013 10:01 PM Post #467   [16] judworth says, "For those of you plagued by ocular rosacea (I have MGD) and very red and sore outer lash line, I have been using Optimel for just over 2 weeks, together with a cream cleanser Ilast and the results are very encouraging! I would say the above products have improved my issues by about 70% already (Optimel says improvement by 4 weeks)."
    • CocaCola has announced a new Coke Zero Sugar brand (a different formula from Coke Zero) today which has been marketed in other countries and will be now marketed in the USA. For you CocaCola lovers who want to avoid sugar you may want to try it out. CocaCola will be eventually drop Coke Zero from its line of products replace it with Coke Zero Sugar. Read this in the Los Angeles Times.  I have listed for your convenience the ingredients of Diet Coke, Coke Zero, and Coke Zero Sugar if you are interested in knowing:  Diet Coke 
      Ingredients: Carbonated Water, Caramel Color, Aspartame, Phosphoric Acid, Potassium Benzoate (To Protect Taste), Natural Flavors, Citric Acid, Caffeine. Coke Zero
      Ingredients: Carbonated Water, Caramel Color, Phosphoric Acid, Aspartame, Potassium Benzoate (To Protect Taste), Natural Flavors, Potassium Citrate, Acesulfame Potassium, Caffeine.  Coke Zero Sugar
      Ingredients: Water, Colour (Caramel E150d), Phosphoric Acid, Sweeteners (Aspartame, Acesulfame K), Natural Flavourings Including Caffeine, Acidity Regulator (Sodium Citrate). Contains a Source of Phenylalanine  
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