Clear Cell Sarcoma Foundation (formerly Sara's Cure) is an organization dedicated to providing a place for CCS patients and caregivers to come together for sharing and support, while taking an integral step toward better treatments and outcomes. We are a family who cares about the well being of each other. You are not alone.
I am Lennie, mom to a CCS warrior and co-founder of the Sara’s Cure Organization. When my 17 year old daughter was first diagnosed with CCS I was shocked to learn that a disease so deadly had no standard of care protocol for treating it. We soon realized that CCS research was isolated to small underfunded projects with no central hub.
In the early days of Sara’s Cure, we thought we would simply raise money to fund a CCS project and thereby drive data that would shed light on an effective treatment. We quickly learned that we would have to become more involved than anticipated to fund specific research focused on CCS, as well as connect with physicians and researchers with any knowledge on CCS.
A Scientist is only able to work on projects that are funded. If there is no funding for CCS, they will work on other projects for which they have funding. This is why we have urgency to raise funds for CCS research. If we are not pushing for it, no one will be. This is reality for many rare diseases which is why we belong the National Organization for Rare Disorders (NORD).
Alone we are rare but together we are strong and able to use combined resources for improving patients lives. After we formed Sara's Cure in early 2018, we aggressively sought to connect with the best minds.
While asking questions on a general sarcoma site, I was introduced to the most amazing group of CCS patients and caregivers that had been supporting each other through an online platform for years. This is how we found our calling and mission - which is to give patients the voice and platform to engage the medical community and find an effective treatment for this relentless cancer.
"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
"I'm Emily Powell, I'm 28 years old and I was diagnosed with Clear Cell Sarcoma in the summer of 2019"
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.
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.
