ESUN

A Ten-Year Journey

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

We are officially celebrating the 10 year anniversary of the Liddy Shriver Sarcoma Initiative this month as it was formed in November 2003. Over this period of time, we have worked with several thousand doctors, nurses, researchers, patients, caregivers, families and friends, and the bereaved, attempting to help make a better world for people affected by sarcoma. We are indebted to all of these people for their involvement, commitment, help and generosity. Reaffirming our mantra, "Sarcoma Knows No Borders," the assistance has come from people all over the world who believe in our cause and the quality of our work and who share our passion. We deeply appreciate everyone who has been part of our 10-year journey. We give you our sincere thanks.

From the beginning, the Liddy Shriver Sarcoma Initiative embraced an international focus and actively encouraged collaboration among physicians, researchers, institutions, advocacy groups, patients, and caregivers. We try to help those afflicted with sarcoma no matter where they live. Our Medical Advisory and Editorial Board has worldwide representation, and its members are deeply involved in a wide range of important activities in the sarcoma community. We have funded sarcoma researchers in a dozen countries in grants totaling over $3 million US dollars in a range of bone and soft tissue sarcomas. We have reached out to a number of sarcoma advocacy groups to work together with us in funding several of these grants. Our Faces of Sarcoma Project contains over 800 photos of patients from over 30 countries, representing over 30 different subtypes of sarcoma. We have published over 140 articles in ESUN, the peer-reviewed bimonthly which we inaugurated in February 2004. Translations, undertaken by sarcoma oncologists and investigators, of a number of the sarcoma review articles appear in eight different languages to benefit people speaking these languages. Excerpts from ESUN articles are distributed throughout our website to help visitors understand many issues related to the diagnosis and treatment of this family of diseases. Our readership has grown from a few hundred people in 2004 to currently over 35,000 visitors to our website each month. A number of sarcoma centers and advocacy groups continue to hold annual events that stemmed from the International Sarcoma Awareness Week which we initiated and coordinated for seven years. The first such event involved seven people. In 2010, more than 21,000 people participated in 85 events in 14 countries. Many of these events had significant media and newspaper coverage, enlarging the audience of people who became aware of sarcoma well beyond those who participated in the actual events. We have scores of interactions weekly by phone, e-mail, and social networking with patients, caregivers and survivors from many different countries about treatments, referrals, second opinions, hospice and dealing with grief and loss.

The infographic, "Together we have," summarizes some of what has been accomplished during these past 10 years with the help of many, many people. A number of physicians, patients and caregivers have written to us telling how the Liddy Shriver Sarcoma Initiative has helped them and others. Please take a few minutes to read some of these messages as they substantiate that “Together, we are making a difference.”

We know only too well that progress in research is frustratingly slow, and that many who are dealing with sarcoma today have limited treatment options. We know that sarcomas are often diagnosed in young people who face potential dangerous, long-term complications. We know that federal funding to support research in sarcoma is woefully inadequate. And we know that sarcoma advocacy groups need to support sarcoma research until this changes. So, we know that we must press on with our mission. Hopefully, there will be no need for a 20th anniversary celebration.