Sarcoma Alliance

An Update on the Sarcoma Alliance

Arthur Beckert

Executive Director, Sarcoma Alliance

[Editor's Note: This is another article in our ongoing "An Update on" series. These articles are intended to bring awareness to the sarcoma community of the goals, activities, and resources of various sarcoma advocacy organizations. This issue's article is focused on the Sarcoma Alliance.]

New Website

The Sarcoma Alliance is excited to announce a new, improved website - same address, great new look and feel. Jean-Laurent Vilon, a member of the Alliance’s Board of Directors was instrumental in taking the vision of users and the Alliance’s Board to create a site that is more useful to both the first time visitor and long time users of the information and services the site provides.

The goal is a site where the information is the main focus and not the design interface itself. The easy access to information was the main concern. The result is a simple web site that has an elegant interface.

We began by looking at what information we had, how it was organized, and how users actually used the site. From this came a totally redesigned home page where users can easily find the information they need about Sarcoma Alliance, its programs and services and about the diagnosis and treatment of sarcoma. Right from the home page are links to the discussion board, chat room, Peer to Peer Program and our financial assistance services. Information on sarcoma centers and news are more prominently displayed.

Most importantly we wanted to show a human face and tell the story of people and connect the audience and let them know that they are not alone. That’s what the goal of this web site is all about.

During the coming year we will be focusing on the site’s content. We will be updating information where needed and adding additional content so that it is more useful to everyone affected by sarcoma. If there is information or topics you would like included please let us know. The site is yours, and we will continue to work hard so that everyone in the sarcoma community can get the information he or she needs.

Peer to Peer Program

In December 2005, the Sarcoma Alliance fulfilled a long held dream by rolling out the Peer to Peer (P2P) network. Since our founding one of our overriding principles has been to provide ways for sarcoma patients to support each other through our discussion board, weekly chats and face to face support groups. The P2P network provides the ultimate support allowing a one on one connection. The entire sarcoma community thanks ARIAD Pharmaceuticals that made the first year of operation possible with a generous grant.

Over 250 people have signed up for the program. There are both women and men ranging from teenagers to those over 60. Participants come from 29 different states and from nine countries. Over twenty subtypes of sarcoma are represented. Each week new survivors and caregivers sign up making it easier to find the perfect match. Last fall we surveyed participants who responded by saying the process of signing up was easy, and they were pleased with their match.

A quick review on how the program works. The program is available to everyone affected by sarcoma – patients, caregivers, family members and friends. Interested individuals can visit our website for a more in depth description. Each participant must sign a confidentiality agreement and adhere to a code of ethics. An easy to fill out application is available on our website; a paper application can be mailed to you by contacting our office. Once you have filled out an application, it is reviewed at the Sarcoma Alliance. An acknowledgement will be sent to you, and if necessary, a request for additional information. When a potential match is identified, each party is sent a brief description of the other individual. If both are comfortable with the match, name and contact information is sent out. It is up to the matched individuals to contact each other and work out the best process for ongoing communication.

Finally, we are extremely pleased to welcome the Northwest Sarcoma Foundation as a partner to increase the reach of the program and involve more individuals. We will be working with them to assure that everyone affected by sarcoma, no matter where they live, never feel isolated or unable to get the guidance, education and support they need.

Assistance Fund

Last year was the Assistance Fund’s biggest year providing grants to a greater number of individuals. The program began in 2003 to help sarcoma patients with the costs associated with getting a second opinion from a sarcoma specialist. This program will reimburse any expenses directly related to getting a second opinion including professional fees, diagnostic testing, pathology, and travel. Travel expenses include auto, airfare, hotel, and meals; expenses for one caregiver are also eligible. Initially the maximum reimbursement was set at $250 but over the years this has increase to $1,000. Individuals are eligible to reapply on an annual basis. Like all our programs a detailed explanation is available on our website.

For more information or answers to any questions about the Sarcoma Alliance and its programs, please contact Arthur Beckert by e-mail or by phone at 415-381-7236.