For The Patients
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.
A letter from
Lennie Woods
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. As my husband and I along with a very good friend, who happened to be a research scientist, scoured every journal and publication we realized CCS research was isolated to small underfunded projects with no central hub. This left the few doctors with experience in CCS from being able to adequately support the patients. Little to no funding for such a rare cancer meant that no one was working full time to find a treatment much less a cure. This just is not good enough for anyone and especially our children and the young adults that CCS primarily effects.
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. If there is no funding for a rare disease like CCS, no scientist will be working on it. 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 the non-profit in early 2018 we aggressively sought to connect with the best minds. When 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.
Our Story
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.
Newly Diagnosed?
Newly Diagnosed? You have come to the right place. Sara’s Cure is here to make sure you have all of the information, resources, and connections you need to make the best decisions for your health, family, and future.
Patient Registry Info
Learn about our patient registry.
Definitions You Should Know
As a patient it is important to know what is being discussed when it comes to Clear Cell Sarcoma.
Clinical Trials
Learn about our Clinical Trials.