A Glimpse Inside the Liddy Shriver Sarcoma Initiative

Mary Sorens, Associate Editor of ESUN

As the person responsible for the Initiative's website, I have had a unique window into the world of sarcoma advocacy and research. In the midst of working with Bruce and Bev to gradually end the Initiative, I'd like to share some of my incredible experiences with our donors and supporters.

Working with Doctors and Nurses

There are a lot of people out there who have no faith in the "medical machine," in pharmaceutical companies, toxic therapies, and even in physicians. While I deal with my own doubts about the system, it has been eye-opening to see sarcoma specialists and researchers using their talents and resources for good. They speak of being inspired by their patients, and their persistence in researching sarcomas and trying (again and again) to help people is really something to see. In addition to writing and reviewing ESUN articles, researchers and clinicians have answered our e-mails late into the night, recorded videos for ESUN in their homes before the sun was up, planned and participated in Team Sarcoma events for thousands of people, and have done their best to help patients who have contacted us in dire situations, often from impoverished nations far away.

When I attended a meeting of the Connective Tissue Oncology Society a few years ago, I was nervous to meet many of these doctors. I had read their research papers and exchanged messages with them in some cases, but I was intimidated to approach them during such a busy meeting and take up some of their time. What I did not expect was the personal connection I felt with them as we sat down to discuss this disease. To meet sarcoma specialists is to know that patients and advocates are not alone and all is not lost. I will walk away from this project a firm believer in the PEOPLE who are dealing with rare cancers and who will ultimately prevail in unlocking their mysteries and saving thousands of lives in the future. I also walk away with a heart full of gratitude and respect for their service and kindness.

Connecting with Sarcoma Patients and their Families

People dealing with sarcoma come from nearly every walk of life and every perspective. Their needs range from cancer care to friendship, meaning, laughter, pain relief, hope, empathy and purpose.  Discussions within the online sarcoma community tend to revolve around these topics. I entered those discussions a decade ago, wanting to help and to be helped…I leave them knowing more than I ever hoped to know (for better and for worse). It is a sense of enlightenment I would not wish for anyone, and one I would not dare to deny anyone either. People who stand together when facing a disease like sarcoma will soon stand together in dealing with great loss, pain and death. Those who survive learn how to cheer each other on despite the pain. Their hugs are warmer and their laughs are heartier, and no one has to mention why. When you've shared this bond with a group of people, your life is never the same. I will carry all of this with me forever. I will carry it into every annual checkup and every injury to my "bionic arm," and I will never be alone.

Challenged by Determined Advocates

We all have ideas of what we might achieve with our lives. We think we understand our limits – just how many hours we can work when pushed and how long we can keep going that way. I am most grateful for my experience with the Initiative because it has changed my understanding of the human capacity for goodness and achievement. In my frequent interactions with the Initiative's volunteers, even during the most stressful and sleep-deprived work weeks, I have found them to behave with consistent character and clarity of purpose. They have brought out the best in me and in countless people around the world in order to save and improve lives. I can only conclude that the advocates I've met, who were often dealing with their own illness or grief, were driven by love for all people, everywhere, who were in a similar struggle. They used their own difficulties to create beacons of hope for others, envisioning incredible results and then doing the work to achieve them.

Over the years, so many fun and inspiring Team Sarcoma events have been dreamed up by volunteers. Then pictures were shared and newspaper articles were published, with quotes from thankful participants who grew and learned together. The beauty is that all of these events funded groundbreaking research, and I've read every research report. Many of them are full of new insights about sarcomas and promising leads into better treatments. I am convinced that these advocates' efforts have created links in the chain of scientific advancement that will reach to the future and change lives.

Walking On with Hope...and Thanks

Now that my role in the Initiative is ending, I ask myself what can I achievewhat can you achieve – when we have love, a vision, and a willingness to do great things? My answer to that question is much different now because of the Initiative…I will do more good in the world because of all of the people I've met on this journey.

I challenge everyone who hopes to help others facing a disease to go for it. Develop a vision and work toward it. Seek out wise advice and help with the obstacles that arise. The people you will meet and the lessons you will learn will be invaluable.

To everyone who has shared this journey with me, and to all of those who continue working to help:

May you be happy.
May you be healthy.
May you be safe and protected.
May you live freely and with ease.

Peace and many, many thanks,
Mary