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Prostate Cancer SPORE Patient Advocacy

Prostate Cancer SPORE Patient Advocacy

Members

Dan Shevrin, MD leads the SPORE Advocacy and Outreach Program. He is well qualified to serve in this role, as he has been extremely involved with the prostate cancer community in the Chicagoland area for over 20 years. He is very involved with the Us TOO Prostate Cancer organization and serves as Medical Director of the Us TOO chapter at Glenbrook Hospital, one of the largest and longest running chapters in the Chicagoland area, with monthly meetings typically drawing 40-50 men and family members. He is a frequent speaker at other Us TOO chapters and at various cancer "wellness" centers throughout the region. He has a strong working relationship with local and national Us TOO leaders.

Mr. John Craib-Cox has been a SPORE advocate since 2015 and has lived in Lincoln Park since 1974. He is primarily an interior designer concentrating on older buildings, but his initial experience with Chicago architecture was teaching training classes for the Chicago Architecture Foundation.  For many years, he has taught classes on the history of architecture and interiors with a focus on historic preservation. A special teaching interest is instructing professionals in retrofitting older buildings to bring them into compliance with the Americans with Disabilities Act and the Guidelines for Historic Restoration. He has also taught classes in urbanology and history at Chicago’s Center for Life and Learning.

Mr. John Downes serves as co-leader of the advocates. As an advocate for four years, he has attended and supported the Northwestern University SPORE Group. He participates in several Us TOO Chapters and support groups, attended seminars and other prostate cancer related meetings and continues to make efforts to collaborate with our group and others to make a positive difference in the lives of prostate cancer patients.

Mr. James A. Schraidt is a commercial finance and real estate attorney practicing in Chicago. After undergoing surgery for prostate cancer in 2010 at age 58, he became active in the UsTOO support group that meets at Gilda's Club in Chicago, and has been leading that group for two years. He is a member of UsTOO's board of Directors and is excited about participating in SPORE and bringing news about research and clinical trials bask to UsTOO to push out to the network of support groups. Jim is in the third generation of his family to suffer from prostate cancer and is passionate about finding a better diagnosis, treatment and support paradigm for his son and others in the next generation.

Mr. Ralph Wozniak is a member of Us TOO and Mets Group in Inverness, Illinois. He is very interested in the state-of-the-art prostate cancer treatments being developed in the SPORE. As part of the SPORE patient advocate group, Mr. Wozniak endeavors to inform others of the potential and actual advances being made in the various SPORE projects.

Goals and Activities

The value this advocacy group brings to the SPORE is manifest by a shared goal to help translational research create important clinical trials and make them available to the prostate cancer community. The advocacy group achieves its goals through the following efforts:

1. Advocates as "ambassadors"

The advocates serve as a vital link ("ambassadors") between the SPORE and the larger prostate cancer community. The advocates have strong relationships with the prostate cancer community and are perceived as lay experts due to their involvement with the SPORE. They are therefore able to raise awareness in the community about SPORE goals and activities, particularly as they relate to clinical trials.

2. Advocates and Patient Recruitment to Clinical Trials

The guiding principal is that advocates will only recommend a trial if it is one in which they, themselves, would participate if qualified. This personal investment is critical to their success in educating and encouraging men to consider participation in trials. Dr. Shevrin has worked with the advocates to create a "Clinical Trial Data Sheet" for each trial that outlines answers to questions about rationale, eligibility, study design, side effects and relevant endpoints. Dr. Shevrin makes arrangements for clinicians responsible for the trials to attend meetings with the advocates to review the trials and clarify any issues they may have.

3. Advocate Input to the SPORE

The advocates are invited to attend all SPORE investigator meetings. The SPORE leadership recognizes the importance of the patient perspective in the conduct of the SPORE, particularly as it relates to clinical trials. Likewise, the advocates feel strongly that the patient perspective is heard.

Additional Resources for Patients and Advocates

www.ustoo.org
Us Too International. A grassroots, non-profit prostate cancer education and support network. Co-sponsor of the annual Sea Blue Prostate
Cancer Walk in Chicago held in September.

prostatenet.com
The Prostate Net. Founded by Virgil Simons, advisor to the SPORE, with a mission to educate and provide services to the prostate cancer and
at-risk communities. Co-sponsor of the Northwestern University Lurie Cancer Center Prostate Cancer Symposium for patients and
professionals.

advocacy.cancer.gov
National Cancer Institute Office of Advocacy Relations.