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The State of the Sarcoma Alliance 2005
by
Arthur Beckert Executive Director
Introduction The Sarcoma Alliance, a non-profit organization located in Mill Valley, California, was founded in 1999 by Suzanne Leider during her struggle with synovial sarcoma. A visionary, she realized there was a great need for an organization to serve the entire sarcoma community. She was passionate about this mission. Today, this passion and commitment is very ably carried out by the Sarcoma Alliance’s Board of Directors.
What is our mission? Simply, it is “to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, guidance, education and support.” Sarcoma is a rare and aggressive cancer which upon diagnosis often produces anger, fear and a sense of isolation. As the opening page of our website indicates by bolding stating, “You are Not Alone.”
This simple mission is a challenge to carry out and a responsibility everyone involved in the Sarcoma Alliance takes seriously. Because of its rarity, sarcoma often causes patients to feel a great sense of isolation—both in terms of learning about their disease and finding others to talk about their hopes and fears. Our current program and plans for the future are focused on the sole purpose of better serving all sarcoma patients, their families and their caregivers.
Current Programs and Activities The Sarcoma Alliance is run by a very active Board of Directors who have played a key role in the success and growth of the organization. This growth has included reaching a solid financial footing during the last couple of years. This along with the desire to enhance existing programs and begin new ones gave the impetus to hire a full time Executive Director in March of this year. The Executive Director along with an office manager provide an increased operational strength and allow the board to focus on the strategic direction of the organization.
Web-based Services Currently we receive more than 2,000 hits per month on our website from people searching for assistance. The website contains guidance for those people newly diagnosed by listing sarcoma centers and methods of searching for a physician in specific geographic regions with expertise in sarcoma. It also includes links to treatment guidelines developed by the National Cancer Comprehensive Network and clinical trials, education materials including research articles, published papers, sarcoma specific information and recommended reading. Finally, patients can seek support from personal stories of inspiration, learn how to receive financial assistance for second opinions, and participate in our chat rooms and bulletin board.
Newsletter Our bi-annual newsletter is distributed to more than 3,500 people all over the world. The newsletter contains information on surviving sarcoma, updates on our work at various conferences and seminars, medical information, and stories of hope and inspiration all in an effort to reduce fear and isolation.
Support Groups The Sarcoma Alliance currently supports two support groups, one in northern and one in southern California. Participation in these meetings include those newly diagnosed, people in the process of undergoing treatments (chemotherapy, radiation, and post surgical intervention), those with no active signs of disease, and caregivers.
Patient Education In addition to our web-based services, we receive many requests each month for information, assistance and resources. These requests come via email, the regular mail and by telephone. The types of information requested relates to sarcoma in general, specific sub types, where to seek treatments, clinical trials and support groups. Disease-specific literature is sent to patients. Information about sarcoma list serv and chat rooms are provided to all in a kind and supportive manner and free of charge.
Sarcoma Awareness Week We designate the second week in June as Sarcoma Awareness Week. This week is dedicated to raising awareness of sarcoma and honoring and celebrating all those who have been affected by this terrible disease. During the week we have had events in the San Francisco Bay Area and provided materials and assistance to those planning events in their local communities.
Hand in Hand: The Suzanne R. Leider Memorial Assistance Fund The Assistance Fund is perhaps our most unique program. This program provides financial support to sarcoma patients so they can have the financial resources necessary to receive second opinions from physicians specializing in the diagnosis and treatment of sarcoma. We will reimburse expenses up to $500 per patient related to travel, phone bills, costs of evaluation and any related charges. In order to receive funding patients need to fill out a form with name, address, diagnosis, physician and insurance information and include copies of all receipts. Both the patient and physician must sign the form. The form can be downloaded from out web site or requested from the Sarcoma Alliance’s office.
Advocacy We have formed collaborative alliances with other cancer advocacy, medical, nursing and research groups to change the face of sarcoma treatment and support services. We work to increase funding for sarcoma research and to assure that all sarcoma patients receive the most appropriate care. During the past few year the Sarcoma Alliance has been represented at the major oncology conferences in the United States including American Society of Clinical Oncology, American Association of Cancer Research, Oncology Nursing Society and the Connective Tissue Oncology Society.
The Future Although we are very proud of our accomplishments, we know there is more we can do. The Sarcoma Alliance is currently developing a strategic plan and is examining issues such as funding, programs and areas where we should expand services. We will be developing more educational materials both on the web and in print. Major priorities for 2005 will be to implement a Peer-to-Peer Program and to bring together sarcoma patient advocacy groups from around the country so sarcoma patients are better served and represented.
Peer-to-Peer Program Our support groups, both web-based and face-to-face, meet the needs of many in the sarcoma community. Some, however, are not comfortable in group settings or have needs that are so unique they need to talk with someone one on one. By the fall of 2005 we will roll out our Peer-to-Peer Program. We have done some initial surveying and found there is a great need for this type of service. When it becomes fully operational we will be able to match patients with a mentor based on such factors as age, gender, specific diagnosis, geographic location, and how they would like to be contacted (e.g. phone, email, and face to face)
Sarcoma Summit There are many wonderful patient advocacy groups throughout the United States providing needed services to sarcoma patients. There are, however, a number of issues that would be better addressed with a unified voice from the sarcoma community at large. We are currently working collaboratively with the Sarcoma Foundation of American, Association of Cancer Online Resources (ACOR) and Sharon Anderson, an LMS survivor, to plan the summit.
Among the issues we have preliminarily identified are how we can be more effective in increasing funding from the federal government, increasing the number of clinical trials for new treatment options, and other issues such as enhancing research through tissue banking. This collaborative voice will allow us to work more effectively with the provider community and the myriad of governmental agencies. We will be contacting other organizations to seek input and hope to have a meeting planned prior to the meeting of the Connective Tissue Oncology. We also welcome any ideas or input you may have.
The success of the Sarcoma Alliance ultimately depends on how well we serve the sarcoma community. To do this we want and need to hear from you. We love to hear when we have done well but it is also important to hear ideas about how we can improve our programs or new ones we should undertake. We also want to hear your stories that serve as our inspiration and motivate us to do more. . Finally, we encourage you to donate your time and money to make our community strong. Thank you for all your thoughts and support. Please visit our website.
V2N4 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative.
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