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Annotations, a collaborative effort by Bruce Shriver and Tom Swartz
There are a number of very useful websites that are specifically focused on one or more types of sarcoma, including various not-for-profit foundations. We discuss some of them here.
After the loss of his mother, Kathryn, to sarcoma, in addition to his own 18-month battle with the disease, Tom Amschwand established the Amschwand Sarcoma Cancer Foundation for the purpose of educating the public about sarcoma, supporting those with the disease, and encouraging sarcoma-specific research. The site includes advice for those recently diagnosed, a list of some of the adjunctive cancer therapies available that may be helpful in complementing traditional therapies used to treat sarcoma, and a reading list.
A site where one can share the pictures and a biography of someone we love who has, or has had, Ewing's sarcoma. The site also has e-mail and postal addresses of those in the Ewing’s Sarcoma community.
The Brian Morden Foundation was created to honor Brian, a courageous 19 year old, who battled Ewing's Sarcoma for more than two years. He lost the battle on February 15, 2003, but his family, friends, and many others who only knew Brian by reputation have vowed to continue the fight against this horrible disease. The foundation has three goals: (1) fund research for the express purpose of finding a cure and/or better treatment for Ewing's Sarcoma; (2) provide funding to improve the quality of life for patients and staff on the Oncology service at Children's Hospital in Pittsburgh, PA,; and (3) provide funding for a "Brian Morden Memorial" higher education scholarship.
Children's Cancer Web is an independent non-profit site that was established in 1996 to provide a directory of childhood cancer resources. According to their site, their aim is to “make it easier to find more specific childhood cancer information quickly. This is achieved by providing an index of some of the key cancer-related sites and pages”. They have information regarding Ewing's sarcoma, osteosarcoma, rhabdomyosarcoma and other soft tissue sarcomas (click here to access this information). The site also lists a set of points about quality of medical information on the Internet.
Dr. Stephen Z. Fadem's Sarcoma Website Dr. Fadem is a practicing Houston nephrologist and a Clinical Professor of Medicine at Baylor College of medicine. A sarcoma survivor, he maintains this site containing the latest sarcoma news, general cancer stories, and a list of clinical trials relevant for the sarcoma patient.
European Society for Medical Oncology (ESMO) ESMO was established to advance the art, science and practice of medical oncology and disseminating knowledge in order to maintain a high common standard in medical practice for cancer patients. Among other things, ESMO develops clinical practice guidelines (CPG) to inform medical decisions in oncology will be important for the quality of care of cancer patients. The ESMO website contains clinical recommendations for Ewing’s Sarcoma of Bone, Osteosarcoma, and (soon) Soft Tissue Sarcomas. The complete list of clinical recommendations can be found by clicking here. ESMO's Patient Corner has a list of links that may be helpful to patients in various European countries.
Kristen Ann Carr Fund Sarcoma Forum The Kristen Ann Carr Fund provides grants for cancer research and seeks to improve all aspects of cancer patient life with an emphasis on adolescents and young adults. The Kristen Ann Carr Fund honors the life of Kristen Ann Carr (1971 - 1993). Established at Kristen's request, the Fund continues in her spirit and convictions in its efforts to: (1) provide funding for research and treatment of sarcoma; (2) provide funding for the education of young physicians; and (3) improve the quality of cancer patient life.
LeioMyoSarcoma (LMS) The LeioMyoSarcoma (LMS) website is a significant resource to those having to deal with this disease. It contains a number of useful tutorials for the newly diagnosed, discusses disease management, treatment techniques and treatments by metastatic site, and gives advice on coping with leiomyosarcoma. The “How do you know who to trust” points on the the LMS links page is well worth reading by everyone doing web searches for any type of disease. The site also contains an extensive glossary of medical terms.
Leiomyosarcoma and other Soft Tissue Tumors This site contains links to general information about sarcomas, treatment alternatives for lung metastasis, liver/abdominal metastasis, as well as information on angiogenesis inhibitors, antineoplastons, immune/vaccine therapy, chemotherapy and chemosensitivity testing, and alternative therapies.
Leiomyosarcoma (Additional Resources) The Leiomyosarcoma Cancer website, the National Leiomyosarcoma Foundation website, the Internet Resources for Leiomyosarcoma Patients, Families and Caregivers website, and the LMS Warriors Roll Call website.
The Life Raft Group is a non-profit organization providing “support, through information, education, and innovative research to patients with a rare cancer called GIST (Gastrointestinal Stromal Tumor)”. GIST belongs to the general class of cancers called sarcomas. Membership in the Life Raft Group is free and is open to GIST patients and their families. The “Treatment” section of their website contains information about clinical trials and an international medical directory of Sarcoma/GIST specialists.
The Northwest Sarcoma Foundation is intended to be a place of support and education for those who are living with a sarcoma and other rare bone tumor diseases. The site provides a general overview of sarcoma and its treatment, and then points to more comprehensive resources, which have been evaluated by a member of their staff. The Northwest Sarcoma Foundation primarily serves pediatric and adult groups for the Washington, Wyoming, Alaska, Montana and Idaho region of the Pacific Northwest. However, the site is for anyone looking for information pertaining to sarcoma and its treatment.
Sarcoma Foundation of America (SFA) The mission of the Sarcoma Foundation of America is to act as an advocate for increased research to find new and better therapies with which to treat patients with sarcoma. The SFA raises its own funds to provide research grants to sarcoma researchers. The SFA also interacts with public (NCI, FDA, etc.), private for-profit (pharmaceutical companies, etc.) and private non-profit (e.g., philanthropic foundations) organizations to raise awareness of the treatment needs of sarcoma patients. Its site includes a list of patient resources, upcoming and previous fund raisers, and information for researchers on how to apply for SFA research grants.
This page is a resource for United Kingdom patients diagnosed with a soft tissue sarcoma. It provides links to web pages around the world which can offer information and advice to patients. The “Sarcoma UK” newsletter was first published in April 1993 to provide advice and support to UK sarcoma patients.
The Alliance Against Alveolar Soft Part Sarcoma (TAAASPS) The TAAASPS website was developed to communicate information about the very rare type of cancer called alveolar soft part sarcoma (ASPS or ASP-sarcoma). It contains information about a charitable foundation that was formed to promote advocacy and research to benefit patients with alveolar soft part sarcoma. Among other things the site contains a discussion of Treatment Options and supports a Discussion Forum.
On the home page of The Doctor’s Doctor website, it states, “This web site is dedicated to patient empowerment. Much of the information a physician uses to make a diagnosis comes from clinical laboratory tests and tissue biopsies. These tests are usually overseen or interpreted by a pathologist. This site is run by pathologists who want to help patients understand their test results and diagnoses.” Among the many interesting pages there are detailed summaries of most diseases, referenced with medical literature abstracts. Among the sarcomas that are discussed are: alveolar soft part sarcoma, clear cell sarcoma of tendons and aponeuroses, clear cell sarcoma of the kidney, epithelioid sarcoma, rhabdomyosarcoma, Kaposi's sarcoma, interdigitating dendritic cell sarcoma, low-grade fibromyxoid sarcoma, Ewing's sarcoma, endometrial stromal tumors, angiosarcoma, fibrosarcoma, dermatofibrosarcoma protuberans, liposarcoma, extraskeletal myxoid chondrosarcoma, leiomyosarcoma, and osteosarcoma. There is a very interesting section on the website called “Translating the Report” which helps you to read and to understand a pathology report. This is recommended reading for everyone.
The Cure Our Children Foundation (Barry Sugarman's website) Also listed under our Drug Information category, this is a centralized information site to assist parents, families and caregivers of children who have cancer and other life threatening diseases. With a particular emphasis on Ewing’s Sarcoma, this site will assist in learning about a child's disease, current treatments, new and developing treatments, and holistic and complimentary treatment options. The site also directs the readers to doctors, hospitals and other experts specializing in particular disease treatment and to pharmaceutical manufacturers.
V1N2 ESUN Copyright © 2004 Liddy Shriver Sarcoma Initiative.
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