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Information About Sarcoma Communities
Adult Bone Cancer Survivors (a.k.a., ABC Survivors) Mary Sorens, a survivor of parosteal osteosarcoma started this web site when she wasn’t able to find adult survivors of bone cancers in similar circumstances as she was going through her initial diagnosis and treatment. She wasn’t able to find a mentor to help her with questions about whether her treatment was the same as others, complications of her treatment, and what her new life would be like. Thus, she decided that the best way to right this wrong was to make sure that future patients were able to find mentors, and human resources. Thus, survivors post their stories on the site, and there are online support groups to find such mentors. The site is specifically limited to adults with primary bone cancer. The site also contains a list of bone cancer resources.
Amschwand Sarcoma Cancer Foundation 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 (ASCF) 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 substantial list of resources and links. ASCF provides free short-term housing (one week or less) to sarcoma patients and/or their families who are traveling to Houston for treatment or medical appointments through its Shared Families program. ASCF has also developed a Sarcoma Survivor Notebook that helps patients be pro-active in their treatment, stay organized, and research their disease.
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.
CureSearch is the umbrella group that unites the Children's Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF). These two organizations have related and complementary missions. The mission of COG is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care. At more than 200 COG member institutions worldwide, dedicated physicians, nurses and scientists are conducting clinical trials and performing research to identify cancer causes and pioneer treatments and cures. The mission of NCCF is to support this lifesaving research by raising public awareness and funds through awareness, legislative and fundraising programs, which directly contribute to increasing survival rates. On the CureSearch website, families, patients, and health care providers can find information that addresses the specific needs of patients, parents, and families; learn about COG research initiatives and clinical trials; and discover how to raise awareness about childhood cancers, including bone and soft tissue sarcomas that strike children, adolescents, and young adults such as Ewing's sarcoma, osteosarcoma, and rhabdomyosarcoma.
Desmoid Tumor Research Foundation The Desmoid Tumor Research Foundation was co-founded by Marlene Portnoy and Jeanne Whiting as a response to their frustration with the lack of information and research of desmoid tumors. Jeanne is currently battling the disease and Marlene’s husband had a desmoid tumor resected in March 2004. The mission of the foundation is: (1) to fund research related to the diagnosis and treatment of desmoid tumors; (2) Provide informational support for patients and their families. The Desmoid Tumor Research Foundation will soon have a website available.
European Organization for Research and Treatment of Cancer See the entry "Soft Tissue and Bone Sarcoma Group (STBSG of the EORTC)" below.
Ewing's Sarcoma Photo Gallery (a.k.a. esbabies) A site where people can share the pictures and a biography of someone who has or has had Ewing's sarcoma. The site also has e-mail and postal addresses of many people in the Ewing’s sarcoma community.
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.
In June of 2001, Stacey Leondis, then a student at Garden City High School, New York, established the Foster Foundation. The FOSTER (Fighting Osteo Sarcoma Through Everyday Research) Foundation is an organization whose purpose is to support the research of osteosarcoma, a rare form of bone cancer that primarily affects children. Stacey's goal is to assist the fight against osteosarcoma by collecting funds and putting them towards promising research projects. The foundation has established a trust that assists in funding much needed basic research. These funds are awarded annually as grants to research groups. All funds received by the foundation are tax exempt and are used exclusively to further research. Stacey is currently a junior at Yale University majoring in biology.
GIST Cancer Research Fund (GCRF) After being diagnosed with gastrointestinal stromal tumor (GIST), Tania Stutman and her husband Robert created the GIST Cancer Research Fund (GCRF) with the help of Dr. Ephraim Casper of the Memorial Sloan Kettering Cancer Center. The Mission of the GIST Cancer Research Fund is: (1) To create funding to support research which is vital to the long-term survival of those coping with GIST; (2) To provide patients and practitioners with more data on GIST; (3) To provide information about GIST to the international community; (4) To influence the U.S. Legislature in implementing policies towards coverage of oral drugs; (5) To work side-by-side with medical facilities, creating GIST tumor tissue banks locally and internationally; (6) To provide support for patients and families coping with GIST; and (7) To fund further research that creates methods of early detection for GIST. Ninety seven percent of all the funds raised by GCRF go directly for research on GIST cancer. Their website contains information on recent fundraisers, GIST clinical trial updates, links to recent GIST research results, as well as other patient education resources and links.
GIST Support International (GSI) GSI is dedicated to the support of patients, families, and friends dealing with Gastrointestinal Stromal Tumors (GIST) and to the ongoing research required to treat and cure this disease. GIST belongs to the general class of cancers called sarcomas. You can join an online support group dealing with GIST at GSI’s website where you will meet people from around the world who are dealing with GIST.
Jennifer Hunter Yates Sarcoma Foundation (JHYSF) JHYSF was created in honor of Jennifer Hunter Yates, who died at the age of 33 after battling sarcoma for 17 months. JHYSF supports sarcoma research, sarcoma patient and family education and sarcoma family financial support at the Massachusetts General Hospital Cancer Center. Since sarcoma is such a rare disease, JHYSF is trying to raise public awareness about sarcoma, as well as provide resources to sarcoma patients and families who are recently diagnosed with this disease. A walk to support JHYSF is held on the first weekend of May each year.
Karen Wyckoff Rein-in-Sarcoma Foundation The Karen Wyckoff Rein-in-Sarcoma Foundation was started in 2001 by Karen Wyckoff shortly before her death from synovial sarcoma at age 25. RIS seeks to keep alive Karen's three-part mission of: (1) sponsoring research into the diagnosis, treatment and cure for sarcoma cancers; (2) increasing awareness of these cancers in the general public and the general medical care community; and (3) providing education and support to sarcoma patients, survivors and their loved ones. RIS has a close relationship with the sarcoma doctors at the University of Minnesota Cancer Center. Nearly 2,000 people have attended RIS' celebration/fund-raiser which is held annually in July at St. Paul's Como Park in Minnesota.
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.
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 extensive medical directory of Sarcoma/GIST specialists.
National Leiomyosarcoma Foundation (NLMSF) The mission of the NLMSF is to provide leadership in supporting research of Leiomyosarcoma, improving treatment outcomes of those affected by this disease as well as fostering awareness in the medical community and general public. NLMSF was formed in 2001 and since then has helped fund several research projects directed toward LMS. NLMSF has also worked to set up a tissue bank for LMS. The foundation hosts a yearly event called HUGFEST which is a 2 day gathering of LMS patients and caregivers sharing stories, information and help.
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.
This is a website created by Jesse Moses that consists of medical information with "as much peer reviewed articles as possible pertaining to the treatment of osteosarcoma and cancer as possible, with a focus to U.S. hospitals as international hospitals are not online in English."
Sarcoma Alliance (SA) The Sarcoma Alliance is "striving to extend and improve the lives of sarcoma patients through accurate diagnosis, improved access to care, guidance, education and support". They have extensive guidance, education and support resources on their website, including excellent resources for the newly diagnosed. They also have an online discussion board and a financial assistance program.
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.
Soft Tissue and Bone Sarcoma Group (STBSG of the EORTC) STBSG is one of the working groups of the European Organization for Research and Treatment of Cancer (EORTC). The aims of the EORTC are to “develop, conduct, coordinate, and stimulate laboratory and clinical research in Europe to improve the management of cancer and related problems by increasing survival but also patients’ quality of life.” The objectives of the STBSG are to “develop, stimulate and co-ordinate studies on all aspects of the treatment of soft tissue sarcomas (STS) as well as to organize congresses, symposia and conferences to promote these studies". The STBSG has played a major role in the development of the Response Evaluation Criteria in Solid Tumors (RECIST) criteria. STBSG's assurance program involves a "strict membership policy, central review of responses, central review of pathology, use of a systemic therapy checklist and on site monitoring visit". The STBSG currently has members from 56 institutions from 14 countries.
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.
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.
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 mission of “The Swing Away Foundation” is: (a) to enable sarcoma patients accessibility to leading treatment facilities previously unavailable due to the high costs for medical procedures and extensive travel; (b) further research and experimental treatments through donations to participating medical centers; and (c) create a network of educational information sharing and medical and travel resources for patients in an effort to save others from what we have experienced.
Additional Resources 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.
The Leiomyosarcoma Cancer website, the Internet Resources for Leiomyosarcoma Patients, Families and Caregivers website, and the LMS Warriors Roll Call website.
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.
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