Clear Cell Sarcoma Foundation

For Physicians

The Clear Cell Sarcoma Foundation is committed to helping bring together physicians knowledgeable about Clear Cell Sarcoma. We want to partner with physicians to offer support and connection with other physicians as well as CCS patients. Since CCS is ultra-rare, it is difficult to access up-to-date information quickly. CCS patients and caregivers have participated in FDA listening sessions, Focus Groups and Industry webinars. CCS is our main focus so please reach out to us, we are here for you.

Clinical Trials

Here are the Clinical Trials currently focused on Clear Cell Sarcoma.


Publications helpful in understanding Clear Cell Sarcoma.

Clear Cell Sarcoma 101

A brief summary of current CCS information.

Sara's Story

Watch Sara's Story and how Sara's Cure began.

"I think all the pieces to the puzzle for a lot of these cancers are already out there - ready to be put in place. It just takes people pushing, to get them in place" - Denny Woods

Emily's Story

Watch Emily's story and hear from top researchers and doctors in rare Sarcoma.

"We developed mice that could actually form Clear Cell Sarcomas, genetically" - Dr. Kevin B. Jones, MD

Clear Cell Sarcoma Foundation

Our Journey.

How We Got Started

Sara was first diagnosed on a mission trip where she had emergency surgery to remove a very small tumor with clear margins. At the time, we were so thankful and just knew she had been spared because the tumor was found early and diagnosed relatively quickly. CCS is often not found until it is advanced or metastatic. However, eighteen months later, Sara’s CCS came back and the tumor was larger. This cancer is relentless. Sara was lucky and our circumstances allowed us to get her to the best and most aggressive doctors with some CCS experience and once again her life was saved. It was while she was recovering from the second surgery that Denny and I made the decision we would use every resource we had to find a way to treat this disease and we would not wait for it to find us. With the help of friends and family we started a non-profit and Sara’s Cure was born.

Where We Are Now

Sara’s Cure has made major inroads to Clear Cell Sarcoma awareness. All of the connections we have made with organizations like the FDA, NIH, NCI, NORD and Pharma have been met with compassion and an eagerness to help. Our Clear Cell Sarcoma Family has engaged through listening sessions, focus groups and sharing their experiences with those that are in a position to make a difference. The CCS family has recently been very involved in getting our first ever patient-driven clinical trial for a drug combination (with pre-clinical success in animal models) for CCS.

Lennie Woods

Executive Director / Co Founder

“We are forever in your debt. Without Physicians, Doctors and Scientists at the forefront of Clear Cell Sarcoma, we would not be on track to finding a cure” – Lennie Woods