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  • Message from the Founder - Volunteers and Transparency

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    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. Same for 2015 and in 2020. The board decided to make me the treasurer in 2020 and Apurva Tathe as the director. 

    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).

    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, a grassroots, patient advocacy effort. The other non profit organizations for rosacea are run by non rosaceans who are businessmen and dermatologists. 


    Volunteers
    This is the driving force behind this non profit organization for rosacea founded by rosacea sufferers. For more information

    Spending
    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). 

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

    Who Serves on the Board of Directors
    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. While the board of directors have the final say on this, you can change who serves on the board of directors who are all rosacea sufferers. Try doing this with the other non profit organizations for rosacea. 

    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. This means your donation is tax deductible. 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

    • Cornea. 2024 Jul 5. doi: 10.1097/ICO.0000000000003627. Online ahead of print. ABSTRACT PURPOSE: The purpose of this study was to report the outcomes of quantum molecular resonance (QMR) electrotherapy in the management of refractory pediatric ocular rosacea. METHODS: This is a retrospective case series on 3 female pediatric patients (ages 12, 15, 14 years) with ocular rosacea. Two patients presented with corneal stromal neovascularization and punctate epithelial erosions while 1 patient presented with corneal scarring and paracentral stromal thinning. After failing conservative management, the patients were treated with 4 consecutive QMR electrotherapy sessions with the intensity set at 5 corresponding on average to a power of 12 W, with 60 V voltage and 200 mA current. Informed consent was obtained for off-label use. Patients were assessed for changes in vision, foreign body sensation, tearing, photophobia, and redness at each visit to determine symptomatic improvement. Outcome measures include best-corrected visual acuity, use of supplemental therapies (eg topical steroids) for symptom relief, extent of corneal neovascularization via serial slitlamp photography, and corneal scar remodeling via high resolution anterior segment optical coherence tomography (OCT). RESULTS: Two of the 3 patients experienced improvement in visual acuity after QMR electrotherapy. Corneal neovascularization and scarring regressed significantly in all 3 patients. Two months post-QMR electrotherapy, corneal remodeling was evident on optical coherence tomography in 2 patients. All 3 patients were able to discontinue topical immunosuppressants and remain symptom-free at 1.5 years of follow-up. CONCLUSIONS: QMR electrotherapy is a promising alternative in the treatment of refractory ocular rosacea in childhood and puberty, and it may potentiate corneal remodeling. PMID:38967538 | DOI:10.1097/ICO.0000000000003627 {url} = URL to article
    • J Alzheimers Dis. 2024 Jun 28. doi: 10.3233/JAD-240198. Online ahead of print. ABSTRACT This manuscript reviews the significant skin manifestations of Lewy body disease, including Parkinson's disease and dementia with Lewy bodies, and the diagnostic utility of skin biopsy. Besides classic motor and cognitive symptoms, non-motor manifestations, particularly dermatologic disorders, can play a crucial role in disease presentation and diagnosis. This review explores the intricate relationship between the skin and Lewy body disease. Seborrheic dermatitis, autoimmune blistering diseases (bullous pemphigoid and pemphigus), rosacea, and melanoma are scrutinized for their unique associations with Parkinson's disease, revealing potential links through shared pathophysiological mechanisms. Advances in diagnostic techniques allow the identification of promising biomarkers such as α-synuclein in samples obtained by skin punch biopsy. Understanding the dermatologic aspects of Lewy body disease not only contributes to its holistic characterization but also holds implications for innovative diagnostic approaches. PMID:38968048 | DOI:10.3233/JAD-240198 {url} = URL to article
    • JAAD Int. 2024 May 6;16:112-118. doi: 10.1016/j.jdin.2024.04.009. eCollection 2024 Sep. ABSTRACT PMID:38957837 | PMC:PMC11217679 | DOI:10.1016/j.jdin.2024.04.009 {url} = URL to article
    • Clin Cosmet Investig Dermatol. 2024 Jun 26;17:1551-1552. doi: 10.2147/CCID.S484236. eCollection 2024. ABSTRACT [This corrects the article DOI: 10.2147/CCID.S473598.]. PMID:38952412 | PMC:PMC11215658 | DOI:10.2147/CCID.S484236 {url} = URL to article
    • Heliyon. 2024 Jun 1;10(11):e32275. doi: 10.1016/j.heliyon.2024.e32275. eCollection 2024 Jun 15. ABSTRACT A combination of benzoyl peroxide (BPO) and tretinoin is recommended for treating acne; however, concurrent administration can be irritating, and coformulation is prevented by BPO-mediated oxidation of tretinoin. In rosacea, benzoyl peroxide has been shown to be efficacious; however, its use has been limited by poor tolerability. To overcome these limitations, the active ingredients can be encapsulated within silica microcapsules. The US Food and Drug Administration has approved 2 products using this technology, a combination of encapsulated benzoyl peroxide and encapsulated tretinoin product for acne vulgaris and encapsulated benzoyl peroxide to treat inflammatory lesions in rosacea. The active ingredients are released through small channels in the silica shell, gradually releasing the active ingredients to the skin. This study describes the stability and release profiles of encapsulated tretinoin and encapsulated benzoyl peroxide from the silica shell in physiologically relevant conditions and provides differentiation from traditional formulations. PMID:38947450 | PMC:PMC11214359 | DOI:10.1016/j.heliyon.2024.e32275 {url} = URL to article
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