The Voices and Faces of Sarcoma

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

Over the past several years we have initiated a number of projects that allow the voices and faces of sarcoma patients, caregivers, survivors, and those who lost their lives to sarcoma to be heard and seen. The oldest of the projects is called "Journeys in Sarcoma", followed by the "Faces of Sarcoma" then "Moments in Sarcoma" the and the most recent is the "Everyday Heroes" project. I encourage you to read about these projects and share them with others.

Journeys in Sarcoma

Each of us — whether patient, family member, friend, or a member of the medical team — journeys 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 have published accounts of these journeys to share with people who visit. Some of the accounts are written as essays, others are poems, while others are photographs of paintings, drawings, 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. These contributions give many different voices to sarcoma.

The Faces of Sarcoma

Two years ago we started a project called "The Faces of Sarcoma." We wanted the disease to be known more than by numbers, characteristics, and treatment protocols. We wanted it to be known as more than just another "rare cancer." We believed that a collection of photos of sarcoma patients, survivors, and those who have lost their lives to sarcoma would help us tell the story of sarcoma in a more personal way. We now have over 535 photos in this collection. They have been sent to us from over 30 countries and represent over 35 different sub-types of sarcoma. There are photos of young infants a few months old, of teenagers, of young adults, and of those in their 70s and 80s. As people view them, it makes sarcoma more real, more immediate -- a photo could be the face of their son, their daughter, their husband, their wife. It is an amazing collection of people. We will be making a video from these photos to complement our earlier video "A Forgotten Cancer" (which was translated into 10 languages in 2009).

Moments in Sarcoma

If you were to share just one moment on your journey with sarcoma with others, what would it be? Imagine a collection of moments from people around the world who have dealt with all kinds of sarcomas. What insights would surface? What would we learn? "Moments in Sarcoma" was a project that published moments from the lives of patients and their families, doctors, researchers, and friends. Submissions were invited during the month of February 2009. Then one submission was published daily on the Team Sarcoma Website from April through July.

Everyday Heroes

Heroes support, encourage and inspire us in extraordinary ways. Just when we need them most, they are there. They challenge us, comfort us, and give us hope. The Team Sarcoma Everyday Heroes project invited everyone affected by sarcoma to tell us about their heroes. Submissions were accepted through June 1, 2010, and are currently being published on the Team Sarcoma website. Readers can subscribe to read about the daily hero via e-mail, web feed, or twitter. Three winning submissions and five honorable mentions were chosen by committee and will be announced on July 15th. A donation of up to $3,000 will be made during the International Sarcoma Awareness Week (July 17-25) to sarcoma research in honor of each winner’s hero.

Stories of Courage and Hope

Finally, I should mention that in each issue of ESUN we publish a column, Stories of Courage and Hope, that contains abstracts of inspiring stories we have recently encountered about sarcoma patients, survivors, caregivers and those who have lost a loved one to sarcoma.