About the Foundation
The Prostatitis Foundation was chartered as a 501(C) 3 in October of 1995.
It had grown from an early sci,med.prostate/prostatitis newsgroup started by Dr. Bradley Hennenfent. The newsgroup had drawn a tremendous response from a large group of prostatitis patients and/or their families. After much discussion it became clear that a webpage should be set up to provide information to these patients and some effort to encourage research by the National Institute of Health (NIH) was necessary. There was very little research being done. Patients were very frustrated about how little was known about how to treat prostatitis.
A delegation managed to make an appointment to see Dr. Leroy Nyberg at the NIH and traveled to Washington, DC. The delegation was told that the NIH was aware of the prostatitis problem and would like to do something but did not have any research funds for that purpose. Dr. Nyberg explained that we would have to start an advocacy group and request time to make a plea for research funding before the Appropriations Subcommittee on Education, Health and Human services. The new foundation did all those things and congress did direct the NIH to begin the required research.
The NIH first response was to draw together in Bethesda all the patients and doctors who were interested. That group included Dr. John Krieger from Seattle, Dr. Richard Alexander from Baltimore and Dr. Curtis Nicol from Canada. They all three had been showing interest and were the earliest supporters of prostatitis research even before the Prostatitis Foundation was formed. An Internet survey done by Dr. Richard Alexander and Dave Trissel indicated the predominant symptom was chronic pelvic pain. Thus was born the term chronic prostatitis/ chronic pelvic pain syndrome: (CP/CPPS). This reflected the fact that maybe the pain might not be all caused by the prostate. The NIH began to set up research centers for the study of CP/CPPS and at one time had eleven groups involved.
The first five year plan was extended an additional year to finish the work which had been underway. Neither the first or second five year plan or clinical trials conclusively proved the value of many medicines, commonly prescribed for prostatitis, as being much superior to placebo in long term patients. However, it has been noted by some that the placebo effect is unusually high in prostatitis. . Those two groups were called the Chronic Prostatitis Collaborative Research Network. (CPCRN)
The third five year plan underway now is called The Multidisiciplinary Approach to the Study of Urologic Chronic Pelvic Pain (MAPP) Network . The idea was to draw some other specialties into prostatitis research. It was evident that basic research including different approaches and methods were needed. A disease so evident in early history and so predominant in all populations the world over (estimated at ten percent) has to have more focused efforts. It is important to remember prostatitis is a disease of younger men who are not inclined to discuss such matters and have suffered in silence these many years.
The Prostatitis Foundation determined in their mission statement that we should educate the public about the prevalence of prostatitis and do what we could to encourage and support research to find the cause and a cure for prostatitis. Our newsletters, webpage and forum are all attempts to do that and serve the public to the best of our ability. We do not receive any government funding and rely on support from patients and their families. The officers and directors are all volunteers. Some of us are or have been patients and desire to prevent anyone else from sharing our experiences and frustrations with prostatitis.
patient information Packet 800- 891- 4200 OR Phone 309-325-7184
We're sorry you are having to learn about prostatitis, but we're glad you came here, because we think we can help. Please be advised that the Prostatitis Foundation does
not warrant, support, sponsor, endorse, recommend or accept responsibility for any health care provider or any treatment or protocol performed by any heath care provider.