The Clear Cell Sarcoma Foundation (formerly known as Sara's Cure) is a 501(c)(3) non-profit organization based in Charleston, SC. Established in 2018, CCSF is dedicated to making Clear Cell Sarcoma survivable through education and scientific research. Our mission also ensures that patients and caregivers impacted by this rare cancer have a voice and a platform to drive meaningful change and work toward finding a cure.
A Letter from Lennie
I am Lennie, mom to a CCS warrior and co-founder of the Clear Cell Sarcoma Foundation (formerly known as Sara’s Cure). 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.
Core Values
Our work is heavily shaped by our core values
The formation that helped us become who we are today.
2017-2018
Sara's Cure was born
Another tumor developed and we knew we would not wait for more. Denny and Sara along with our Scientific Director, Kelley traveled to meet the only scientist we could find working from a grant for Clear Cell Sarcoma at the time. That trip revealed how little was known about CCS and that we would do something to change that. Sara’s Cure was born and we started to meet others realizing we are not alone.
2018-2019
First of its Kind Repurposed Drug Screen
Sara’s Cure funded a first of its kind repurposed drug screen and sponsored a nano course for Clear Cell Sarcoma patients and scientists where we met many scientists and clinicians who are committed to changing CCS outcomes.
2019-2020
First Ever Patient-Partnered CCS Trial
An FDA patient listening session and collaboration with Rafael Pharmaceuticals led to a first ever patient partnered CCS drug combo trial
2020-2021
Functional Genomics Platform for Rare Soft Tissue Sarcoma
A partnership with Jesse Boehm, BROAD and MIT to Create a Rare Soft Tissue Sarcoma Functional Genomics Platform as aCommunity Resource.
