About Clear Cell sarcoma foundation

What is the Clear Cell Sarcoma Foundation?

The Clear Cell Sarcoma Foundation (formerly Sara’s Cure) is a Charleston, SC based 501(c)(3) with one mission – to make Clear Cell Sarcoma survivable through education and scientific research while ensuring all patients and caregivers impacted have a voice and platform to enact change and strive towards the cure.

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Dr. Kevin B. Jones, MD

"An effort like Sara's Cure is really important to try to connect people in the earliest stage of their diagnosis"

Dr. Andrea Hayes-Jordan, MD

"Sara’s Cure is one of the critical organizations to be in the corner of Sarcoma"

Our Values

Our work is heavily shaped by our core values

Empathy

Every Clear Cell Sarcoma patient has a story, a life, a family, and a future. We want to give every CCS patient a place to call home.

Responsibility

We believe it is our responsibility to support the patients as well as the research and clinical doctors by using best practices to always keep the mission at the forefront of our work.  

Care & Service

Every member of the Clear Cell Sarcoma family, patients and those who care for them, will have access to the discoveries and connections we make to find a treatment for a better outcome.

Commitment

We are committed to improving the lives of those with Clear Cell Sarcoma and ultimately to all sarcoma warriors through collaboration and sharing of our successes.

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Sara's Cure Growth Timeline

The formation that helped us become who we are today

We are working tirelessly to find a cure for Clear Cell Sarcoma because we believe it is out there. If you believe in what we're doing, we ask that you join us in our efforts to find a treatment and a cure for this disease.

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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 it's 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.

For Patients

We are a family who cares about the well being of each other. You are not alone.

Clinical Trials

Clinical Trials are the primary way that researchers find out if a new treatment is safe and effective in people.

NCCN

NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives.

Guidelines for Patients

Click Here on Guidelines for Patients.

Donate Your Tissue

The single most valuable thing we can do as patients is donate our tissue to research.

Newly Diagnosed?

It’s important when you’ve been diagnosed with something rare to get a second opinion, sometimes a third

Patient Registry

We have officially initiated our patient registry in January, 2020 through the National Organization for Rare Disorders.

Warrior Stories

All of us have a story. Read the stories of our Clear Cell Sarcoma warriors and share your own with the world.

Definitions You Should Know

it's important that we understand these definitions so that we can make the best decisions for ourselves and our family

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