Karen Wyckoff Rein in Sarcoma Fund
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Karen Wyckoff Rein In Sarcoma Fund
A Fund for Sarcoma Cancer Research, Education and Survivor Support
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Sarcoma Patient Support and Research Organizations
While Sarcomas are a rare and often considered "orphan cancers", over twenty non-profit Sarcoma Patient Support and advocacy organizations, like the Karen Wyckoff Rein in Sarcoma Fund (KWRISF) have been established across the country. In addition there are several sarcoma research organizations, not only in the United States but also in Europe. The following listing provides brief descriptions of these organizations along with links to their websites.
Many of these organizations, including three representatives of the KWRISF, came together in November 2005 for the first ever Sarcoma Collaboration summit. As a result of the summit, iSPAN The International Sarcoma Patient Advocate Network) was created. Click here to learn more about iSPAN.
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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. |
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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. ASCF has also developed a Sarcoma Survivor Notebook that helps patients be pro-active in their treatment, stay organized, and research their disease. |
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Brian Morden Foundation - Pennsylvania |
| 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. |
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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. Last updated n 2004.. |
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FOSTER Foundation – New York |
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 and fundsare used exclusively to further research. Stacey is currently a junior at Yale University majoring in biology. |
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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. |
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Jennifer Hunter Yates Sarcoma Foundation (JHYSF) - Massachusetts |
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. |
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Karen Wyckoff Rein-in-Sarcoma Foundation - Minnesota and Upper Midwest |
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. |
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Kristen Ann Carr Fund – New York |
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. |
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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 | |
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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. |
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The Liddy Shriver Sarcoma Initiative undertakes activities that help improve the quality of life for people dealing with sarcoma. Central to this mission are its goals of increasing public awareness of sarcoma and the lack of young adults in cancer-based clinical trials and raising funds for sarcoma-related research. The Initiative believes that increased public awareness of sarcoma will lead to increased research funding and that research will ultimately lead to a cure for sarcoma. The Liddy Shriver Sarcoma Initiative helps fund research that is targeted at finding a cure for sarcoma and, in the short term, research that is attempting to develop more effective treatment regimens than those currently available. It also support organizations that provide programs to directly aid and help sarcoma patients. |
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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. |
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Northwest Sarcoma Foundation – Washington and Pacific Northwest |
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. |
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Sarcoma Alliance (SA) – San Francisco and National |
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. |
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| 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. |
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Sarcoma-UK - Europe |
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. To get download the Sarcoma UK Newsletter Click here. |
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Soft Tissue and Bone Sarcoma Group (STBSG of the EORTC) - Europe |
| 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. | |
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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. |
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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. |
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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. |
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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. |
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