Editorial

Looking Backward to Look Forward

Looking backward, this has been quite a year for ESUN and for the Liddy Shriver Sarcoma Initiative. First, I'll tell you about ESUN. We are deeply gratified that many people are accessing ESUN. We are getting several hundred hits daily, over a third of them coming from outside the United States. I am amazed that this number is so high. We do no advertising. When you do search with any of the popular search engines about a sarcoma-related topic, it's highly unlikely that ESUN is at the top of the results list. I can only speculate that, based on the quality and usefulness of the material, the accesses are a result of "word of mouth" advertising, coupled with the possibility that many people have bookmarked ESUN. I am indebted to the members of our Medical Editorial Board for helping us achieve this success. Each of them has a very demanding schedule. They have given an extraordinary amount of time to continue to nurture ESUN. They have written and reviewed articles, made recommendations about topics and authors, and answer what must seem like an endless number of e-mail and phone messages from me. Yet they find the time to encourage me to continue with ESUN. I am also indebted to our authors and those contributing other material to ESUN who have shared their knowledge and experience with our readers. We are all indebted to our reviewers who give detailed reviews of the articles under a demanding review/publication schedule. Their efforts have aided us in maintaining the quality, relevance, timeliness, and readability of our articles. As you can probably guess, putting each issue of ESUN together takes quite a bit of time. We have a small, tireless, totally volunteer staff. It's inadequate to thank them but I do so now. In particular, I thank Beverly Shriver and Eva Mae Connell for their extensive proof-reading of the articles and to Tom Swartz for the annotations and abstracts he writes, for the material he researches, and to all of them for making many helpful suggestions. I am indebted to the readers who have written and shared their personal stories with me or have asked me hard questions or have thanked me. These notes have meant a great deal to me and have helped me put my time commitment into perspective; there is so much to do and so little time to do it in. I must confess that it is not a particularly easy task to deal, on an ongoing basis, with a disease that claimed the life of our only daughter.

Now, I'll summarize this year for the Liddy Shriver Sarcoma Initiative. In April, 18 of us biked as Team Sarcoma 2005 in Cycle Zydeco in Louisiana to raise public awareness of sarcoma and raise money for sarcoma-related research. We were joined by 70+ other Cycle Zydeco riders who wore "Liddy Shriver Sarcoma Initiative" armbands during the 200-mile, 4-day event. All of us in Louisiana were joined by over 200 cyclists on various Virtual Team Sarcomas in several countries and states in the US. In September, we funded our sixth research grant. We hope that some of the results of these six studies will be stepping stones to finding a cure for sarcoma. We have a new logo that better symbolizes our mission and who we are. We designed a "Sarcoma Ribbon" that supports one of our mantras, "Sarcoma knows no borders". Sarcoma is a world-wide cancer — it knows no national borders. Our "Sarcoma Ribbon" reflects this as the word "sarcoma" appears on it in many of the world's languages. Sarcoma is a cancer of the connective tissues, such as nerves, muscles, joints, bone, or blood vessels. Sarcoma can arise anywhere in the body — i.e., sarcoma knows no borders within the body. Nor does it know age borders or genders. We will turn our sarcoma ribbon into a wrist band and use on our Team Sarcoma Bike Tours and will use it on our T-shirts and biking jerseys. Our "What is Sarcoma" facts sheet will soon appear in over 20 languages.

We recently participated in the first ever gathering of sarcoma advocacy groups that Sharon Anderson played a key role in bringing about and in moderating (see out story in the October issue, "A Gathering of Advocacy Groups" and Sharon's follow-up article in this issue of ESUN, iSPAN: the International Sarcoma Patient Advocate Network). We also made a presentation at the 11th Annual Meeting of the Connective Tissue Oncology Society (CTOS) Meeting in November in Florida. You can download a PDF copy of the presentation that I made by clicking here (it's a large file and, depending on your connection speed may take a bit of time to download). Singer songwriter Ron Martin, a multi-instrumentalist from North Carolina, is sharing the proceeds from the sale of his CD, The Circle, with the Liddy Shriver Sarcoma Initiative to help fund sarcoma awareness and research. And, finally, we launched The Team Sarcoma 2006 Bike Tour, an international event for sarcoma awareness and research, which will be held in Denmark on July 1-7, 2006. Why not join us on this worthwhile tour?

Looking forward, we intend to continue doing what we do, attempting to do it better. We are a small (actually a very tiny) volunteer organization and have quite limited resources (i.e., time, money, and people). Therefore we must carefully choose what we do. We will continue our work on ESUN, the Team Sarcoma Bike Tours, funding sarcoma research, and intend to participate in the two iSPAN Task Group projects. We want to make a difference to those dealing with sarcoma.

In peace and hope, I wish you the very best in the year ahead,

Bruce

Bruce D. Shriver, PhD

Editor-in-Chief, ESUN

PS: I have been asked numerous times why we don't publish a hard copy version of ESUN. The answer is quite simple—to keep our costs to a minimum, ESUN is distributed only in electronic form. Please send me your comments, suggestions and reactions to our efforts.