28 July 2002
Clinical
Trial using Immunotherapeutic
Drug
for
Treating
RRP
19 November 2001
!!
Press release re: new RRP trial using
Immunotherapeutic
Drug!!
15 November 2001
!!
RRP reseacher position announcement !!
23 September 2000
at
AAO Meeting in Washington,
D.C., Sept 23 ,2000 Meeting Overview &
Summary
22 May 1999
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Analysis of Theranaturals' Indole-3-Carbinol (I3C) product
The RRPF and the RRP Website have collaborated in having samples from a recently acquired bottle of Theranaturals I3C analyzed by mass spectroscopy. Analysis results do indicate that the product is still mostly I3C (excluding insoluble filler). Given I3C's known instability this result was somewhat surprising to us. We still have unanswered questions relative to the test results and the testing process (see below) If you are currently taking the Theranaturals product with positive results, we suggest that you continue using the product. We are also suggesting the possibility of a combined therapy approach. (A number of patients in the RRP community are successfully following a regimen of using both I3C and DIM/Indoleplex on alternate days.)
Although our two tests suggest that the Theranaturals I3C product does not appear to be degraded, it is not clear whether the analyses by mass spectroscopy are capable of identifying and resolving all trace condensation by-products, some of which might be problematic. We will continue to investigate these issues. Further discussion is needed with those responsible for the two tests conducted thus far, and we may be submitting other samples of the Theranaturals product for more testing. We strongly encourage Theranaturals to produce I3C on a much more frequent basis to better assure the full potency and purity of their product.
The initial RRPF and The RRP Website joint cautionary advisory statement about Theranaturals' Indole-3-Carbinol (I3C) product can be viewed at: http://www.rrpwebsite.org/thera1.htm.
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10 May 1999
!!! Participants of the I3C study conducted by Clark Rosen, MD - your help is needed !!!
Contact with approximately 40% of those RRP patients participating has been "lost to follow-up". In order to finalize and publish results from this study your help is needed. Irregardless of whether you responded positively or not and even if you were only remotely involved in this study, please contact: Jamie Osborn by phone at 412-647-8094 or by e-mail at: osborne@unix.cis.pitt.edu.
Thank you.
The 17th International Papillomavirus Conference was held in Charleston, South Carolina . RRP received more positive attention at this meeting than any other HPV meeting to date. The most relevant sessions for the RRP community occurred on Sunday,10 January 1999. From 9-11 AM the RRP Foundation hosted a support network meeting, which was attended by 18 RRP patients/families (some from as far as Illinois and Oklahoma) and at least 13 practitioners and/or researchers who have a significant interest in RRP. A 1 1/2 hour scientific session devoted exclusively to RRP followed the RRPF meeting. It was divided into two parts, epidemiology and therapy. Both of these sessions were quite informative. In addition, other sessions involving immunology, diagnosis and therapies included some additional information relevant to RRP. Details and perspectives on discussion and presentations relevant to RRP that took place can be viewed in the detailed meeting report.
******* For a detailed meeting report - click here.
For more information regarding the meeting, and a complete list of all papers and poster see: http://www.pvconf99.org.
To see some HPV meeting pictures - click here.
by
Renee Randall
About two summers ago Kim expressed that she would like to attend an overnight summer camp. She had just been told that she had asthma and that her papilloma had spread into her trachea. The two conditions combined basically meant that the camps she was interested in wouldn't take her because of her respiratory problems. We were contacted by a Social Worker at Johns Hopkins who told us that he was referring Kim to the Make-A-Wish Foundation. At first this worried us because we had always thought of Make-A-Wish being for terminally ill children. It was explained to us that it was for kids with "Life Threatening" illnesses and that it was not a requirement that the child be terminal. They said that it is for kids who suffer from diseases which increase the risk that they may not make it through their 18th birthday. We let Make-A-Wish come out and interview Kim to find out what she would like, and to do the preliminary paperwork, which just involved a few forms and a medical questionnaire which had to be signed my her doctors. Kim's wish was to take the family to Disney World for vacation, but we wanted to hold off until we felt the time was right. After Kim took another bad turn last summer, we decided to go ahead with the wish. Since she already had all the paperwork completed, they made arrangements for the whole family to go to Disney World with all expenses paid within 1 week. They provided airline tickets, a limousine to and from the airport, accommodations, spending money for food and souvenirs, tickets to all the theme parks, a rental car to get around Florida, and several special gifts for Kim when we got there. We were given a pass for each theme park which made sure that we went to the front of the lines for each ride so we didn't have to stand out in the heat and that we had access to special guest suites where we were provided a place to rest and a cool drink. It was an absolutely wonderful time for Kim and really picked her spirits up. I recently contacted Make-A-Wish about how to get other children who suffer from RRP on their Wish List. They are sending me a list of all the regional offices throughout the U.S. and numbers for the Wish Coordinators at each office. They are also sending me a copy of the medical questionnaire which we had to have completed. They said that parents can contact them directly about putting their childs name on the list and they would be thrilled to help. If parents would like the name and phone number of the Wish Coordinator for their area, they can contact me by e-mail at reneerandall@hotmail.com or by phone at 301-574-2410.
The latest meeting of the RRP Atlanta Support Group was held on October 1st, at the Sheraton Four Points Perimeter Hotel and Conference Center.
Dr. Lori Armstrong gave the group a presentaion on The National Registry for Juvenile RRP, which is being conducted by the Centers For Disease Control.
In attendance were RRP patients Erin Davis, Sheppard Vars, BillWidmayer, Christinia Lancaster, Caroline Dugger and Shanda Bridges (mother of a7 year-old RRP Patient). Christina is a regional director for the RRP Foundation. Caroline and Shanda found out about the meeting from a posting on the RRP Foundation web site. Interestingly, they both are from the Montgomery, Alabama, area and met for the first time.
After the presentation, Dr. Armstrong asked the patient group how each was diagnosed with RRP, and how long the process took. In almost all cases, the diagnosis process took longer than a year.
Thanks to all who attended, and a special thanks to Dr. Lori Armstrong or her presentation to the group.
If you are interested in attending future meetings, contact the Atlanta RRP Support Group coordinator, Bill Widmayer at 404-848-1253 days, 770-921-9497 evenings or by e-mail at: widmayer@mindspring.com.
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