Learn about Clear Cell Sarcoma
Definitions to Know
Now that you have this new diagnosis, you are likely to begin researching on your own. What you will find are difficult-to-read publications filled with words that you have never needed to know before. We have included some of those words with definitions here for you. This is certainly not a comprehensive list, but this will get you started. Please remember that it takes time to absorb all of this new information, but you will get it. Don’t hesitate to contact us or others for support. It is good to have a loved one prepared to advocate with you. You are not alone.
“It’s important when you’ve been diagnosed with something rare to get a second opinion, sometimes a third” – Andrea Hayes-Jordan, MD.
what is clear cell sarcoma?
National Cancer Institute’s page on Clear Cell Sarcoma.
Warrior Stories
We are in this together
Patients are what makes our organization special. Every patient’s story helps us learn more about clear cell sarcoma and brings us closer together. Gathering as much information in one place as possible will help us to find a treatment and eventually a cure for CCS.
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.