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Update on the Northwest Sarcoma Foundation
Karen Murphy Executive Director Northwest Sarcoma Foundation
The Northwest Sarcoma Foundation was originally the vision of Dr. Ernest “Chappie” Conrad, who has been treating sarcoma patients for twenty years at the University of Washington Medical Center, Seattle Cancer Care Alliance and Children’s Hospital and Regional Medical Center. His goal was to create a foundation for the benefit of sarcoma patients and their families; one that would help advocate for sarcoma patients and also to aid in the location of additional sarcoma resources.
In 1997, seed money was provided to start such a foundation through a single generous donation in the amount of $25,000. While the Northwest Sarcoma Foundation (the “Foundation”) was quickly incorporated and legally established, finding the time and other interested individuals to get the Foundation up and running was another story. By December of 2002, Dr. Conrad was able to recruit a few individuals to help bring the vision of the Foundation to life and it began formal operations in April 2003.
The mission of the Foundation is to support and educate patients, families and health care providers. First, among its immediate objectives was to create a website that allowed access to information and resources around the nation. Second, the foundation wanted to develop a presence in the Pacific Northwest as no other organization exists to serve this population in Washington, Oregon, Alaska, Montana, and Idaho other than our good friends at the Sarcoma Alliance in California. Finally, there was an immediate need to create opportunities for patients to meet one another in educational and social settings. These objectives were all met within the first year of operation.
The Foundation has held several social and fundraising events since April of 2003, in order to self-sustain its mission. It started with a “Friendraiser” in November of 2003, followed by a Wine and Cheese Reception in September of 2004, raising over $15,000, and most recently, the First Annual Bike, Hike or Trike event on April 30, 2005. The foundation welcomed over 250 participants from Oregon and Washington predominantly, with additional guests from New York and California. Participants were of all ages—with donations being received from individuals all over the United States, raising over $30,000. This event was a heartwarming experience for all, as well as the beginning of our Blanket of Honor. Our Blanket of Honor is a way to memorialize sarcoma survivors and sarcoma victims. The blanket is comprised of standard sized white pillowcases personalized by patients and family members that are sewn together in a quilt-like fashion that will be displayed at all future events. This blanket will be an ongoing effort to honor all those who have fought and continue to fight this dreaded disease. It will be unveiled for the first time at our September 23, Annual Wine and Cheese Reception in Seattle. However, pictures of some of the personalized pillowcases can be viewed on our website.
One of the driving forces behind the development of the Foundation was to be able to help meet the educational and emotional needs for the remote groups in our five-state region. The people affected by sarcoma in the Pacific Northwest often come from remote and rural areas, which geographically have little access to solid primary health care much less the specialized care needed for treating sarcoma. Sarcoma patients and family members travel hundreds of miles for their appointments and treatment, and have extended stays anywhere from one week to several months in the Seattle area. While Portland’s Oregon Heath and Science University has been developing a sarcoma team to treat more adult sarcoma patients over the past several years, and offers an alternative to Seattle; Seattle remains the hub for research and clinical trials for sarcoma. Because of these geographic barriers, and challenges it is even more difficult to support this population of sarcoma patients beyond their medical needs.
We have attempted to address this great need by establishing an email bulletin board for patients to access since we discovered in our research phase before building our website, that these email support forums are an incredible wealth of information, support and very educational for patients and family members. Our e-mail bulletin board had little to no activity after the first six months of operation. We have researched many other very well established and active bulletin boards that we link to, including the Association of Cancer Online Resources (ACOR) and the Sarcoma Alliance. We intend to continue to reintroduce our support forums until we are able to create an active environment.
We are just starting to break ground in our efforts to connect directly with other sarcoma specific foundations and associations. We have board members and staff who are active participants of the Sarcoma Foundation of America, the Sarcoma Alliance, Alliance Against Alveolar Soft Part Sarcoma and Bone Cancer International. We frequently contact the staff and other board members of these groups to ask for guidance. We have also made every conscientious effort to link to every sarcoma related website available, as well as announcing events, new services or programs being offered. We have been received warmly and have been helped generously by many who can teach us how to build a reliable support effort for the sarcoma community. We hope to expand and build strong alliances with our colleagues.
The Foundation’s objectives for the next few years are quite ambitious. Currently, the foundation has an all volunteer board and staff of eight people The Foundation’s board of directors consists of sarcoma survivors, family members of sarcoma patients, as well as sarcoma specialists and legal professionals. We intend to build the Foundation’s capacity by adding additional board members, staff and continuing fundraising events and grant seeking. As it builds financial capacity the Foundation will reach out into other regional communities beyond Portland and Seattle and host events in Idaho, Montana and Alaska. Some intended plans are to hold educational seminars for both patients and health care providers raising not only awareness in diagnosing sarcoma more quickly, but also in the treatment of sarcoma and the importance of research funding.
The Foundation has gained some wonderful momentum in developing its support presence for all sarcoma patients over the past two years. We begin our next few years of extraordinarily hard work with a dedicated board and staff, and a great visionary, Dr. Conrad, who has spent his life caring for and treating both children and adult sarcoma patients. Please stay tuned as the Foundation progresses.
V2N4 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative.
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