My Nonprofit Reviews

My daughter was diagnosed with Clear Cell Sarcoma on Nov 2020 at the age of 13. Needless to say, the shock and utter despair was overwhelming. The doctors and oncologists were so unfamiliar with it, and many had never even heard of this rare form of cancer. Sarcoma is about 1% of all cancers, and CCS is about 1% of sarcomas. Thus, finding information and direction is and continues to be difficult and stressful. Shortly after scouring the internet { never a good thing to do with medical issues }, I found Sara’s Cure. Immediately I was welcomed into the group with kindness and understanding. My plea for help was met with compassion and guidance, and continues to be as we go through her treatment. The team of medical doctors and researchers are the most knowledgeable in the world about this disease, and the founders, Lennie and Denny are a breath of fresh air within a stifling diagnosis.

When my daughter’s oncologist was going to do surgery to remove her tumor, something just didn’t sound right about it. In discussions with the SC team, they connected me to an oncology surgeon, Dr Kevin Jones { now Sara’s Cure’s medical advisor }, who is studying CCS. He helped tremendously in creating a better treatment plan for her and even talked with her oncologist directly to effect the changes that needed to happen. It’s things like this, and the direct and communicative way that they personalize such a harsh disease that makes Sara’s Cure such a huge benefit for us.

I am so grateful that they seek and partner with entities that can truly make a difference doing the research and testing needed. Sara’s Cure doesn’t just stop at helping the patients deal with the emotional side of things, they are leading the way in research and development and bringing attention to CCS. They led me to a rare disease institute that took my daughter’s tumor biopsy so they could duplicate and study it, with hopes of finding solutions that will help fight this for others in the future.

This disease may be rare, but I know that with an organization such as Sara’s Cure, hope is being brought to the patients and families that are suffering. With that hope comes the strength to fight and the knowledge that we won’t stop until we find a cure. And for a mom with a girl who has an adventurous life yet to live, that brings unimaginable joy.