"It is very difficult to obtain fresh surgical tissue with such a rare disease and so few patients, but you can change that. Pattern.org needs fresh Clear Cell Sarcoma tissue to create a sustainable resource. It is easy and only takes a few minutes of your time to fill in an online consent form at Pattern.org and they will handle all the arrangements, working with your surgical institution.
There is no cost or any additional effort on your part to participate! Due to several regulatory issues involved with transporting living tissue across the border, Pattern.org can only accept tissue from the contiguous U.S. currently. If you don’t have a surgery date yet you can still sign up on Pattern.org and leave the date blank. Once you have consented online, if for any reason Pattern.org is unable to accept the sample, Pattern.org will notify you. Please feel free to contact us or Pattern.org with any questions. Thank you for taking the time and for supporting these Clear Cell Sarcoma research initiatives." - Lennie Woods | Executive Director & Co Founder
"What would be even better, is anyone who can connect with Saras Cure and be able to make sure their tissue is processed appropriately from the beginning. It's invaluable" - Dr. Kevin B. Jones, MD
"Secondly, to connect them as a resource to be available to those who are trying to study this disease." - Dr. Kevin B. Jones, MD
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 and research. 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.
