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Vol. 04 Issue 2, Spring 1999
US TOO International, Inc. is an independent peer support organization. It was started by five men, each of whom had been diagnosed with and treated for prostate cancer and were interested in discussing their common problem with others. These men formed the original Board of Directors and held their first meeting in February of 1990. Since then, US TOO has grown to over 550 chapters throughout the United States, including chapters in other countries. The leaders and coordinators of these chapters, as well as the Board of Directors, all volunteer their time and services.
An US TOO support group is an excellent setting to keep abreast of the ever-changing field of prostate cancer. Speakers at US TOO meetings include urologists, oncologists, scientists, nutritionists and other health professionals dealing with prostate cancer on a daily basis. The support group is a good way to discuss possible clinical trials for which a patient may be eligible, as well as newly approved drugs, diagnostic techniques and treatments.
Many support group meetings include "rap" sessions in which patients and family members can discuss issues ranging from treatment side effects such as impotence and incontinence, to topics such as complementary medicines and diet, and new prostate cancer research studies. A new break-out group, US TOO Partners, holds additional, separate meetings of its own. It is designed to provide partners of survivors the opportunity to discuss issues they face themselves while dealing with their loved ones' disease. Prostate cancer is regarded as a family disease since it impacts the lives of patients' wives and other family members. They are encouraged to attend meetings not only to help the survivor, but to gain support for themselves.
Members of US TOO support groups increasingly are joining in the national survivors advocacy movement, especially promoting greater public funding support for prostate cancer research. To enhance this activity, US TOO and the National Prostate Cancer Coalition (NPCC) are working together on the US TOO Advocacy Program, an innovative organizing project designed to enhance the advocacy skills of prostate cancer survivors across the country. This exciting program builds on the vast network of survivor support groups of US TOO and the organizing, training, and grassroots activist skills of the NPCC staff and consultants.
The advocacy program recognizes that men can and will be the most effective public advocates on issues directly affecting their health if given sufficient information, training and direction. The overall goal of the US TOO Advocacy Program is to identify, enlist and support a national team of prostate cancer advocates comprised of US TOO chapter members. US TOO Chapter Advocacy Coordinators serve as the key point of contact within the support group on federal and state legislation and other policy matters.
US TOO publishes two publications, The US TOO Prostate Cancer Communicator, a quarterly newsletter, and The US TOO Hot Sheet, a monthly publication distributed to members at chapter meetings. Publications focus on clinical trials, scientific advances, and events such as regional symposia for professionals, patients and families. For a referral to a local chapter or to find out more about the organization, call the US TOO headquarters office in Hinsdale, Illinois at 1-800-808-7866. A listing of chapters nationwide can also be found on the US TOO web site at http://www.ustoo.com.
Article submitted by Sue Duy, Administrative Director, US TOO International, Inc.
Program on Breast Cancer and Environmental Risk Factors
Cornell University, College of Veterinary Medicine
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Phone: 607.254.2893; Fax: 607.254.4730
Email: breastcancer@cornell.edu
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