ESUN

Focusing our Energies

By Bruce Shriver, PhD
Editor-in-Chief, ESUN

For the past seven years, the Liddy Shriver Sarcoma Initiative has been the driving force and coordinator behind an effort that we call the International Sarcoma Awareness Week (ISAW). It all started with the vision of bringing together the worldwide sarcoma community ― medical centers, advocacy and support groups and sarcoma families ― to organize events during a specific week each year. We hoped that these events would increase public awareness of sarcoma and raise funds to support sarcoma research, clinical trials and services.

The first of these annual weeks involved seven people who raised about $14,000. In 2010, more than 21,000 people participated in 85 events in 14 countries and raised over $640,000. Many of these events had significant media and newspaper coverage, enlarging the audience well beyond those who participated in the actual events.

Each of the sarcoma advocacy groups and medical teams involved in this annual effort has its own valuable mission. In these seven years, well over 150 different groups have been involved. We have worked with hundreds of dedicated individuals and families who organized events during ISAW. It has been extremely rewarding to work with so many organizations and people and to assist them in setting goals, planning their events, and growing their events from year to year.

Because ISAW has grown substantially each year, it has required more and more time from the small band of volunteers at the Liddy Shriver Sarcoma Initiative. We have dedicated thousands of hours toward the coordination, publicizing and marketing of ISAW events! All the while, we are busy with our own objectives of funding research, publishing timely information in ESUN, and communicating personally with patients and families. We regularly receive new grant submissions and are now funding sarcoma research at a faster pace. We handle the peer-review of articles from around the world for ESUN and are driven to provide this information in an easily-accessible format on our website. In addition, each month we answer dozens of personal inquiries from people affected by sarcoma, and we work with families to plan their own Team Sarcoma events to support our Research Grants Program.

We have come to a juncture in our organization's life that makes it critical for us to focus our energies and make the most of our time. Thus, we have decided that we will no longer coordinate ISAW. It is our hope that the ISAW tradition of collaboration and support will continue long into the future. We hope to see medical centers and advocacy groups continuing to host events, in the spirit of the ISAW tradition, that benefit everyone affected by sarcoma.

We are redoubling our focus on what we do best ― funding quality research and providing timely and useful information to the sarcoma community. We plan to grow our Research Grants Program and expect to fund exciting new research projects this year. We will continue to fund sarcoma research in many countries, as we believe quality research should be funded wherever it is being done. We encourage the submission of grant applications that involve collaboration across institutions as well as across departments within a single institution, and we will continue to seek out and work with other advocacy groups to co-fund quality research.

We also plan to increase the scope and coverage of ESUN. ESUN has excellent international representation on its Medical Advisory and Editorial Board, and articles are written, reviewed, and ultimately read by an international audience. ESUN articles are being translated by medical professionals into several different languages and now appear in Spanish, French, Polish, and Chinese. All of these articles are found at SarcomaHelp.org, which we will improve and expand in the coming year.

We would like to extend an invitation to everyone affected by sarcoma to plan new and exciting Team Sarcoma events to support research through the Liddy Shriver Sarcoma Initiative. The phrases "Team Sarcoma™" and "Team Sarcoma Initiative" have been used for events associated with the Liddy Shriver Sarcoma Initiative since our first event in April 2003, and we will continue to use them for events that benefit the Liddy Shriver Sarcoma Initiative's programs. With the help of dedicated patients and families, Team Sarcoma events will take place throughout the year and well into the future!

Working together we are stronger. Working together our voices are louder.