RRP ISA Survey Results

    (Important Disclaimer)


    Newsletter 4/29/08

    (1) The attached PDFs show some impressive statistics for our website (www.rrpwebsite.org). They were made using Google Analytics, which is an objective analytic tool for web-usage trends. They pretty much speak for themselves, but the following highlights are reiterated here:

    As of April 29, 2008, Google Analytics showed that RRP ISA had 2873 visits in the previous month, which is not bad for a non-profit medical organization. The stats also showed that there were 1969 "absolute unique visitors" and 10,848 page views. Viewers came from 70 countries/territories.

    Many more Analytics views are available, including state by state showings. We can make more of these available if people wish to see them. I am thinking of opening an account which the public can access, so it can see these Google stats in real time.

    That said, the number of "absolute unique visitors" seems very high. In an effort to understand the black art of Google Analytics, I asked our webmaster, who is quite experienced in Google, to prepare an explanatory paragraph. This is what he wrote:

    Accuracy of Visitor Statistics

    Visitor statistics are better at showing trends over time as opposed to absolute numbers. Visitors are tracked by their IP address which identifies their computer on the internet. As they move through the website, page information is associated with that IP address and eventually makes up the statistics for that visit (it counts a visit to the website as a single visit, even though people may go to many different pages). Most visitors, however, use an ISP (internet service provider) that has a pool of several thousand IP addresses that they assign randomly as people use the internet. The same visitor to the www.rrpwebsite.org returning throughout the month may use a dozen different IP addresses and therefore appear to be a dozen new visitors. That's why it better to compare stats from month-to-month or even year-to-year to view the trends instead of the absolute numbers. 
    We want these numbers to be as accurate as possible. If anyone else (Farrel? Ben?) has insights that could be of help, please drop me a line.

    (2) We recently sent a letter to the Sanford Health Foundation, advocating that its $400 million grant program go to HPV. You can see that letter on http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/372/ . We put Dr. Tom Broker in touch with Sanford as well, and he will weigh in with them on this subject.

    (3) The history of the message board is explained on http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/276/. While our message board is definitely being used (as of the end of April, we had 67 users, 174 posts and 53 threads), it isn't exactly breaking any records. At the time of this snapshot, it was up for 103 days.

    It is important that when we look at the "unmet needs" in the RRP community that we start by acknowledging needs that have already been met. We give the RRPF's LISTSERV high marks for its person-to-person connections. It has, over the years when RRP ISA was anguishing over its own message board format, endured to become quite popular. While I don't think the RRP community has that many unmet needs with respect to message boards, I do propose keeping RRP ISA's message board open through May, and seeing what will happen. It could be closed, however, at the end of that time. (See discussional thread at http://rrpwebsite.org/forum/index.cfm?page=topic&topicID=32.)

    Whether or not our message board stays up, however, RRP ISA will be creating an entirely different interactive forum. It will be called the "RRP Shout Blog." 

    Now, I typically get several questions a week from patients. Some of them appear in the message board, some don't. I try, as much as possible, to reply in a responsible and nuanced way (i.e., I endeavor to base my reply on facts, not chit-chat or anecdote). In several cases, I have even brought in an RRP researcher or asked that an otolaryngologist respond. Some of my replies are fairly long, however. I ask myself whether these "replies" might not best be featured in blog-form, where readers can respond underneath the main post. One person suggested that the RRP Shout Blog might even build on the RRPF's LISTSERV, wherein we develop blog articles that elaborate on some of the themes being currently considered, often very briefly, on the LISTSERV. If cidofovir is "hot" on the LISTSERV at the moment, for example, we could feature a blog article on cidofovir, wherein more detailed and expanded information can be shared. I must say that I really like that idea. It accentuates collaborations, not competition.

    Please look for a new blog feature on our site in the very near future.

    Besides myself, we hope to recruit some physicians, RRP researchers, perhaps a young person with JORRP, parents, adults taking certain adjunctive therapies, maybe even an OB-GYN or two. Please let me know if you are interested and if you've blogged before, send me a sample, if possible.

    This will be a fun and exciting project. Please stay tuned.

    (4) Sometime this week, the Donate Page on our website will be fixed and you will be able to use it without problems. I apologize for any delays.

    (5) RRP ISA is looking for additional board members, and we would like to recruit some people who are not specifically connected to the RRP community . We're looking for people with experience in marketing, business, law, media awareness, pharmaceuticals, medicine, etc. For more on our current constituency, please see http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/294/. If you know of anyone who sounds like a match, please give me a shout. (We already have a ten-member scientific advisory panel, but this will be a board position.)

    (6) A few days ago, I posted on the website that I had a small recurrence of papilloma on my left vocal cord. I have reason to believe it is growing quite slowly, and I continue to be impressed with the use of artemisinin and possibly (??) Gardasil. Even if the papilloma is still very small in mid-May, I may have it removed anyway--it still hasn't affected my voice--just to monitor its rate of recurrence, in light of my use of ART and GARD. I will keep the community updated on http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/370/.

    (7) RRP ISA hopes to be announcing two large grant relatively soon. The first grant will be to study artemisinin and Gardasil, as described on http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/273/ . Some moneys will also be allocated to study the efficacy and safety of the MMR vaccine as a therapeutic agent. Given the huge doses (~29 ampules) that one physician uses in a single adult procedure and given the fact that there are often multiple procedures, it is time to find out if it works and is safe under IRB conditions. 

    RRP ISA plans to vet these two grant applications through a respected body of researchers that we've already identified. They will independently rate the applications, which will then be sent to our own scientific advisory panel. We will be sharing more as things develop. We expect to announce these grant applications this summer.

    (8) RRP ISA will be facilitating and coordinating all aspects of the 2008 RRP Focus Session, to be staged September 20, 2008, in Chicago. It will occur in conjunction with the American Academy of Otolaryngology meeting.

    RRP ISA also coordinated and sponsored the 2005 RRP Focus Session (http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/320/). Our theme in 2005 was "Thinking Outside the Box," and we brought researchers to the conference from around the world. This year, we'll have a different theme, yet to be decided. We want fresh presentations and some fresh faces. Please let us know your ideas.

    This has been a long, but full-featured Newsletter. Thanks for your interest and for your continued support. 

    Warm regards,

    Michael Green, MSW, LICSW
    President and Executive Director
    International RRP ISA Center
    PO Box 4330
    Bellingham, WA. 98227
    Phone: (206)200-6158

    RRP ISA is a non-profit, charitable 501(c)(3) corporation,  Federal ID 91-2156850.