Liddy's Story
Sarcomas
Clinical Trials
ESUN
Funded Research
Sarcoma Calendar
Initiatives
Personal Journeys
Links
News
Donations
Volunteer
First Time Visitors
Searching Our Website
Guest Book

Suggestions

1. Is this your first visit to our website? If so, we suggest that you click here to read some information that make make it more productive.

2. After you explore our website, we invite you to make an entry in our Guest Book.

3. Click here to view a short animation of our mission and initiatives.

4. Please send us a note if you have any problems with our website.

 

Our Mission

The Liddy Shriver Sarcoma Initiative undertakes activities that help improve the quality of life for people dealing with sarcoma. Central to this mission are our goals of increasing public awareness of sarcoma and raising funds for sarcoma-related research, family services, and clinical trial studies. We believe that increased public awareness of sarcoma will lead to increased research and clinical trial funding and that research will ultimately lead to a cure for sarcoma. The articles in our Electronic Sarcoma Update Newsletter, the abstracts of clinical trials, as well as other information on our website empower cancer patients, their caregivers and their loved ones by helping them understand and discuss their disease and potential treatment options with their medical team. This information also aids them in dealing with their disease. The Liddy Shriver Sarcoma Initiative helps fund research that is targeted at finding a cure for sarcoma and research that is attempting to develop more effective treatment regimens than those currently available. We support organizations that provide programs to directly aid and help sarcoma patients and their families. Our logo represents patients, their caregivers and loved ones, and the medical team working together to improve the quality of life for those who have sarcoma. The breaks in the links and the breaks in-between them are meant to remind us of the difficulties that often occur in communicating with each other. The Forget-Me-Not touches each link and represents the many people who touch the lives of the patients, the caregivers, and the physicians in their journeys with sarcoma. The background consists of the small round blue cells that identify Ewing’s sarcoma, which is the sarcoma Liddy had. We encourage you to read about her story of courage and hope by clicking on the Liddy's Story button on the left.

Important Recent Additions to Our Website
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The October 2008 Issue of ESUN is now available on our website.

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Form a 2009 Team Sarcoma Events in your area. Check either the Team Sarcoma web log.  Be one of the voices that will be be heard during the International Sarcoma Awareness Week, July 18-26, 2009!

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Read about The Faces of Sarcoma project.

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Visit our Sarcoma Post-It® Links web pages for a variety of easy-to-use links to a variety of sarcoma resources. This resource complements our links subweb that you can access by clicking on the button "Links" in the column at the left.

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Click here to view a webpage giving hints and examples of how to search our website.

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The "partial index" to the feature articles appearing in ESUN has been updated to link to all articles up to and including the current issue of ESUN.

A Forgotten Cancer: View a video that gives basic information about sarcoma by clicking on the following image.

You can also view this video in six different languages as show below.

Click on any of the images below to view a video that gives basic information about sarcoma and contains a link to resources about sarcoma in the selected language.

Chinese

French

German

Italian

Japanese

Polish

Spanish

   

Sarcomas

Sarcoma is a rare and dangerous cancer. Between 15-20% of all children's cancers are sarcomas and about 1% of adult cancers are sarcomas. There are over 50 subtypes of sarcoma. We make available articles and other information related to a number of these subtypes of sarcoma and each month we add additional information and subtypes. Because sarcoma knows no borders, we have translated the Sarcoma Facts Sheet into 15 different languages. Click on the Sarcomas button on the left to explore this material.

Clinical Trials

We have collected and summarized information on many clinical trials that sarcoma patients may be eligible to participate in. Some of the trials are for specific sarcomas while others cover several sarcomas. Each trial has its own eligibility requirements. The data has been collected from sources in different countries. We have grouped the studies into three categories:

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Category 1: Clinical Trials Currently Accepting Eligible Patients

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Category 2: Clinical Trials that have been Announced but are Not Yet Recruiting Patients

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Category 3: Clinical Trials that are No Longer Recruiting Patients or that have been Suspended, Completed, Withdrawn, or Terminated

You can access any of these webpages by clicking one on the Clinical Trials button to the left.

Electronic Sarcoma Update Newsletter

The Electronic Sarcoma Update Newsletter (ESUN) is an on-line, bi-monthly newsletter that contains articles of interest to patients, caregivers, physicians and nurses. In addition to feature articles that focus on specific sarcomas and current issues in dealing with these cancers, it has regular columns discussing clinical trials (Clinical Trial News), recent research findings (Research Corner), a Q&A Column which addresses questions sent in by readers, and a column that deals with a general potpourri of topics (Odds & Ends Column), and a Stories of Courage and Hope column. ESUN has been accessed by thousands of readers worldwide since the inaugural issue in February 2004. ESUN has an internationally known and respected medical Editorial Advisory Board. Click on the ESUN button on the left to access the current and previously published issues.

Funded Research

We have currently funded five sarcoma-related research projects at Stanford University, the University of Pennsylvania, Baylor University, Huntsman Cancer Institute at the University of Utah, the University of Michigan, the Dana-Farber Cancer Institute, Fondazione IRCCS Istituto dei Tumori in Milan, Italy, West German Cancer Center at the University Hospital in Essen, Germany, SARC (the Sarcoma Alliance for Research through Collaboration), and the Hillman Cancer Center at the University of Pittsburgh Cancer Institute. Click on the Funded Research button on the left to read about these projects.

Initiatives

We have a number of initiatives focused on helping us achieve our goals: this website itself, ESUN, and our bike tours. Click on the Initiatives button on the left to explore these initiatives and see how they might benefit you or if you might like to become involved in one or more of them.

Personal Journeys

Each of us—whether patient, family member, friend, or one of the medical teamjourneys down the road dealing with cancer along a different path. Each of our personal journeys is filled with our own hopes, fears, anxieties, concerns, dreams, needs and expectations. We publish accounts of these journeys to share with people who visit this website. Some of the accounts are written as essays, others are poems, while others are photographs or paintings or sculptures. We welcome accounts of all forms. Knowing others are experiencing some of what you personally are going through can be of great help in confronting cancer. To read some of the journeys click on the Journeys button on the left.

News

You can read recent media coverage and recent press releases by clicking on the News button on the left.

Links Subweb

Being told that you, a loved one, or a friend has any cancer, let alone one of the types of sarcoma, can be a frightening and stressful experience. All sorts of questions immediately spring to mind. "Do people survive this type of cancer?" "Will I die?" "What will happen to my family?" There is an entire new language to learn—CT Scan, MRI, bone scan, pathology report, chemotherapy, side effects, dosing, radiation therapy and metastasis. The list seems endless. Most important, it would be nice to talk to someone who has gone through what you're about to go through—someone who has "been there". There are many resources on the web, ranging from medical information to support groups. Patients and their caregivers, family members, loved ones and friends can all benefit from becoming involved in an online support group. Sometimes medical professionals also join support groups and contribute to the ongoing discussions. To read about some online support groups devoted to various subtypes of sarcoma, click here. 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. To read about them, click here. We make available a wide variety of information regarding drugs and treatment regimens as well as a database of anecdotal information submitted by those who have undergone treatments for sarcoma. Click on the Links button on the left to explore our Links subweb.

Hints for Searching our Website

You can search for information on a particular page once you have it displayed in your browser or you can search our entire website for occurrences of words or phrases or you can switch between these two methods. Click here to see some example of how to do this.

Privacy Policy

We are committed to protecting the privacy and confidentiality of everyone that accesses our website. This website provides a number of opportunities for individuals to interact with us; for example, these include online activities and services such as requesting information from us, sending us feedback or comments, or making an online contribution. Individual identifying information provided to us will be maintained in strict confidence. This includes, for example, names, addresses, telephone numbers, e-mail addresses, and information about online activities that are directly linked to an individual. The Liddy Shriver Sarcoma Initiative will not divulge any identifying information submitted to us to outside individuals or organizations except as authorized by you (e.g., the use of photos while on one of our our bike tours or an entry on our Journeys page) or required by law. From time to time, we will use statistical summary information to help us focus our resources and in planning our initiatives. To protect the privacy of all individuals, any publicly released information is completely anonymous with no names or other identifying information mentioned.