Preparing for a Transition
We would be less than honest if we did not say that it is very difficult to pen this editorial about the transition that lies ahead for us. As you may suspect, publishing ESUN, administering the Research Grants Program, tending to the budget and organizational issues of the Liddy Shriver Sarcoma Initiative, and interacting with many sarcoma families and physicians every week takes a good deal of time and effort. We are both accustomed to very long hours and seven-day weeks. A few years ago, we agreed that we would continue these activities in the sarcoma advocacy community until Bruce was 75 years old. As he turns 75 next October, we are preparing to reduce the Initiative's projects and programs.
Our journey this past 11 years has been filled with countless friendships and shared moments of joy, laughter, tears, loss and grief. We have been honored to become part of the extended family of many sarcoma patients. How can we thank them and the caregivers, survivors, doctors, nurses, researchers and friends who have welcomed us and our mission into their lives and given us so much of their time and help along the way? Words fail us. We can only express our heartfelt gratitude. We have been forever changed by our sarcoma journey.
Here are our plans for the Initiative's transition over the next year.
The November issue of ESUN will be the last issue, completing an 11-year run in which we will have published hundreds of articles on a wide range of clinical and research issues in sarcoma. Scores of these articles have been translated by oncologists and researchers into their native languages, demonstrating the value of the articles and helping people around the world.
We will continue to fund sarcoma research, processing selected grant applications through the end of this year. As always, investigators who receive our grants are required to publish both their experimental plan and a report of their results at SarcomaHelp.org. Starting next year, we will publish these articles as "LSSI Bulletins" until the last one has been submitted, which will likely be in late 2016 or 2017.
As of today (July 1, 2014), we will no longer accept targeted donations intended to support research into specific sarcomas. Instead we will accept donations for our general fund through the end of this year, and these donations will be used to support the final research studies that reviewers urge us to fund.
Our website, including the Faces of Sarcoma Gallery, will be available to visitors for years to come, and we will continue to add photos to the Gallery through the end of 2014. This project is a legacy to honor those who are currently in treatment for sarcoma and those who have lost their lives to it. Each face represents a story of courage while facing this disease. These are real people, not numbers, not statistics.
By the end of 2014, we will no longer have a presence in social media, including Facebook and Twitter, and will refer our website visitors to active groups dedicated to advocacy and support. We appreciate the wonderful community that has developed in the Team Sarcoma group on Facebook, and after it closes we hope that its members will continue reaching out in the various online groups dedicated to sarcomas.
We anticipate that, by the end of next year, the Initiative will have funded over 60 grants, totaling well over $5 million. At least one quarter of these studies will have involved researchers from several countries, working together to help improve treatment efficacy, patient options and, ultimately, to help find cures for many sarcomas. We have also reached out to over 20 different sarcoma advocacy groups and foundations to help fund several of these grants with us. We believe that both of these commitments and accomplishments – encouraging and supporting international collaborative research and sarcoma advocacy collaboration – have been an integral part of our vision and our mantra, "Sarcoma Knows No Borders."
Bruce and Beverly
Founders of the Liddy Shriver Sarcoma Initiative