The National Alliance of State Prostate Cancer Coalitions (NASPCC), and Myriad Genetic Laboratories recently collaborated on a prostate cancer patient survey. The objective was to learn about the experience of men diagnosed with prostate cancer, top of mind questions upon diagnosis, thoughts about treatment, and awareness/interest in genetic testing to increase the information on a patient's specific tumor to help both the physician and patient optimize disease management decisions. More than 100 men diagnosed with prostate cancer responded to the survey, offering greater insight during prostate cancer awareness efforts.
The survey used the NASPCC’s state membership lists and ran from July 8 - July 26, 2016. Men diagnosed with prostate cancer were selected through an email invitation and online opt-in survey. The results of the survey are being used to increase awareness of the ability of genetic testing to offer greater information to optimize disease management decisions. [The survey references data on file at Myriad Genetic Laboratories.] A copy of the survey results can be found at prolaris.com/prostate-survey
---
Image credit: Photo licensed through Creative Commons by Pixabay.
The twelfth annual meeting of the National Alliance of State Prostate Cancer Coalitions is slated for September 30 through October 2, 2016. The meeting will be held in Atlanta Georgia at the Atlanta Airport Marriott Gateway Hotel.
Representatives of prostate cancer coalitions from 27 states will be in attendance at the meeting along with presenters from major sponsoring organizations from across the country. A highlight of the meeting will be a panel discussion regarding shared decision making and prostate cancer featuring Dr. Lisa Richardson, the Director of the CDC’s Division of Cancer Prevention and Control.
>>The agenda for the meeting may be found here...
The National Alliance of State Prostate Cancer Coalitions is extremely grateful to the Sponsors who have made our twelfth annual meeting possible through their generous contributions.
Revised: 09/29/16
 NASPCC Annual Meeting Agenda - Final | [ ] | 811 kB |
The 11th Annual Meeting of the National Alliance of State Prostate Cancer Coalitions was held on October 2 - 4, 2015 in Chicago, Illinois. Representatives of more than 30 states were in attendance at the meeting and their general consensus was that the meeting was a great success.
The meeting agenda included presentations from doctors, scientists and researchers about new and emerging screening tests and treatment for prostate cancer; clinical trials including how to find and participate in trials; pharmaceutical access programs for men who otherwise cannot pay for pharmaceuticals; and sexual intimacy for prostate cancer survivors.
Elections were also held for new officers and members of the NASPCC Board of Directors. New officers include Merel Nissenberg, President (California), Michael Siler, Vice President (Utah), Don Lynam, Treasurer (Kentucky) and Bob Shekhdar, Secretary (Connecticut).
Newly elected members of the Board of Directors are Beverlyn Eckert (Arkansas), Ed Haddad (New Hampshire) who was also elected Director at Large, Rob Johnson (Wyoming), Jan Marfyak (New Mexico), LaTanya Patton (Missouri), Johnny Payne (South Carolina), Gabe Rosko (New Jersey), Michael Zaragoza (Delaware), and Kristine Warner (Pennsylvania).
Second day activities included presentations and breakout sessions on coalition development and support, public policy advocacy, and education and awareness which are NASPCC’s three strategic core processes.
Perhaps most importantly, the meeting provided a collegial and collaborative environment loaded with information and idea sharing that will certainly assist state and coalition representatives with their prostate cancer activities in their states.
| 2015 Annual Meeting Agenda | [NASPPC Agenda] | 451 kB |
“Walking with a friend in the dark is better than walking alone in the light. . .
Alone we can do so little; together we can do so much.”
- Helen Keller
A strategic alliance is an agreement between two or more parties to pursue a set of agreed upon objectives while remaining independent organizations. Strategic alliances occur when two or more organizations join together to pursue mutual benefits.
During the past year, the NASPCC has formed several important strategic alliances to assist with implementation of the organization’s new education and awareness and public policy advocacy strategic priorities. Following is information about the organizations and programs/projects with which those alliances have been formed.
| Organization | Strategic Priority | Projects |
|---|---|---|
|
|
Public Policy Advocacy | NASPCC and Us Too International combined databases, training resources, funding and the efforts of leadership of both organizations to conduct an extremely successful public policy advocacy training for members of Us TOO and affiliates of NASPCC. Additionally, both organizations joined forces in support of important prostate cancer funding issues in congress. For more information about those efforts please... |
|
The California Prostate Cancer Coalition (CPPC)
|
Education and Awareness (Informed Decision Making) | NASPCC and CPCC combined funding from NASPCC and expertise from CPCC to develop criteria for informed decision making regarding prostate cancer screening, treatment and quality of life. The criteria is displayed on a laminate for distribution to men and their doctors and in a video which can be accessed here... |
|
National Comprehensive Cancer Network (NCCN)
|
Education and Awareness (Prostate Cancer Best Practices) | NASPCC joined with and agreed to adopt the NCCN Version 1. 2015 Prostate Cancer Best Practices Guide which can be found here. Access to the guide is governed by this legal language provided by NCCN: “Linked with permission from the National Comprehensive Cancer Network, Inc. © 2015 All rights reserved. The NCCN Guidelines for Patients® and illustrations therein may not be reproduced in any form for any purpose without the express written permission of the NCCN. To view the most recent and complete version of the NCCN Guidelines for Patients®, go online to NCCN.org.” |
|
The Patient-Centric Prostate Cancer Collaborative Coalition (PCPC3) |
Public Policy Advocacy and Education and Awareness | PCPC3 is a group of independent, not-for-profit, patient-centric organizations whose primary, shared goals include the education and support of men with diagnosed with prostate cancer, their family members and care-givers, and all men at risk for prostate cancer. |
|
One Voice Against Cancer (OVAC)
|
Public Policy Advocacy (Cancer Funding) | One Voice Against Cancer (OVAC) is a collaboration of national non-profit organizations representing millions of Americans, delivering a unified message to Congress and the White House on the need for increased cancer-related appropriations. |
