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    Communicate

    Newsletter: 9-27-08

    1.) RRP ISA and the RRPF recently sent a letter to the RRP Task Force recommending that it take a leadership position in endeavoring to get research efforts underway into the use of ART in treating RRP. (See attached PDF.)

    The RRP Task Force recently met and reported that, in response, to the sense of urgency put forward in our letter, it “elected to contact Dr.Richard Schlegel and ask for him to make a 5-10 minute presentation to the Task Force at its May meeting regarding his work in this area. Additionally, Dr. Wiatrak volunteered to try and put Dr. Schlegel in touch with Dr. Tom Broker to review the available data and suggest further applications for translational research involving RRP.”

    I am not sure what the latter sentence means, since Drs. Broker and Schlegel have very different focus specialities, although both are interested in HPV. Moreover, I myself put Dr. Schlegel in touch with Dr. Broker several years ago, shortly after Dr. Schlegel presented at the RRP Focus Session in LA in 2005. I also spoke to Dr. Broker several times in the past two years about ART, the potential involvement of Dr. Wiatrak, etc.

    Any otolaryngologist on the RRP Task Force could have easily accessed Dr. Schlegel's 2005 PowerPoint and MP3 on http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/320/. If any Task Force member was interested in reviewing Dr. Schlegel’s comments in 2007, he or she could have easily reviewed http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/321/ . The letter to the RRP Task Force pointed to a wide array of links, including these, and we assumed that members of the Task Force would read them.

    While I appreciate the RRP Task Force's stated interest in hearing from Dr. Schlegel for 5-10 minutes in 2009, the question remains: Why put a decision off till May 2009 when we have already heard from Dr. Schlegel and others, whose presentations were already posted on the RRP ISA website or, alternatively, whose journal articles are likewise posted?

    A joint letter like this is unprecedented in the history of the RRP Task Force. Why wait for six more months to begin the process of reviewing the relevant material when the RRP community--that means you and your physicians--for some time has had easy access to artemisinin-related MP3s, PowerPoints, and probably at least 30+ (guessing here) links already posted on our website?

    After talking to Bill Stern, we both speculated that at least some of the doctors at the RRP Task Force meeting may have been unaware of what Dr. Schlegel and others had previously said.We also agreed that (1) All physicians on the RRP Task Force optimally would revisit the links and see what Dr. Schlegel and others previously said; and (2) the RRP Task Force should assertively engage this issue in ongoing email discussion WELL BEFORE the May 2009 meeting.

    2.) RRP ISA, in the next 2-3 weeks, will start setting up regular monthly telephone conferences , paid for by RRP ISA. We anticipate allowing up to 15 patients, family members and physicians into each conference.

    There will be two monthly conferences for residents of the United States , and one for residents outside the U.S. This will allow up to 45 patients (or physicians) to talk to each other and conference each month, every month. The numbers here may or may not prove problematic. We can’t imagine allowing more than 15 to participate on a conference at any one time, but we may (?) need to scale the number down a bit if 15 is too unwieldy.

    The first conference in the United States will be scheduled in October. The second conference will be about two weeks after that (end of October), with the conference for those outside the United States scheduled around the same time. Further details will be posted online, and also be disseminated to people who have signed up.

    We ask that people sign up for the conferences in advance by using the contact form (http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/303/) on the main website and letting us know of your interest. Please don’t ask to participate in more than one conference a month. Respondents will be allowed to participate on a first come, first served basis. We will let selected respondents know by email how to call in, and when, etc.

    3.) RRP ISA urges everyone (patients and doctors) to complete or update their online survey (http://www.rrpwebsite.org/index.cfm?fuseaction=page.display&page_id=36 ). It’s one of the best ways to ensure that you’re on our email list.

    NOTE: Our developer has figured out how to allow you access to your old records so your can update your old data. Don’t try it just yet, but this feature should have been thoroughly tested and released in the next few days. Stay tuned.

    4.) Dr. Narendra Singh has joined our scientific advisory panel (http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/314/&CFID=1289601&CFTOKEN=50673029 ). He is an artemisinin expert in the School of Bioengineering at the University of Washington . See his CV, as attached.

    5.) RRP ISA depends on donations, as you know. We’re tax-exempt (that means you should be able to deduct your donations to the full extent allowed by IRS rules), and we operate under a matching grant (see http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/302/).

    The easiest way to tangibly acknowledge that what we offer is of value to you is to make a donation, a recurring donation, or some other provision as described on this page. The important thing, I think, is that you step up to the plate yourself, rather than waiting for others.

    Many banks outside the United States do not verify addresses. Donation attempts have been set up to trigger an alert and not go through if there is no address verification. If you live outside the United States , we urge you to consider sending a check instead of using the credit card feature.


    Thank you.

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

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