We invite you to give $5 towards a cure for Clear Cell Sarcoma.

 

Sara’s Cure

Sara’s Cure is a grassroots, race-against-time campaign focused on funding critical research to find a cure for ultra-rare Sarcoma. The mission of Sara’s Cure is 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 toward the cure.

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Volunteers & Contributors

Dollars Raised out of our $250,000 goal for repurposed drug testing.

About Our Foundation

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.

Vision

Sara’s Cure strives for a future where all sarcoma researchers and clinicians work collaboratively in all sarcoma sub-types towards a better outcome and treatment for all sarcoma patients. 

Promise

We will continue to work everyday to give these patients a voice and hope. We will strive to assure that they are not overlooked, misdiagnosed or given treatments that aren’t for this disease. We will continue to push for a viable treatment and in the end, a cure for Clear Cell Sarcoma.

 

Our Story

 

Sara’s Cure began with Lennie and Denny’s daughter, Sara, being diagnosed with Clear Cell Sarcoma at 17 years old. Sara’s Cure has grown to many other young patients joining our fight…Our race-against-time mission to cure Clear Cell Sarcoma. We have grown to support many patients suffering with rare cancer and continue to work daily advocating for them alongside industry, regulatory and clinicians while trying to find a cure by directly supporting research for Sarcoma.

We Have the Power to Impact Our Future, and We’re Doing Something About It

We at Sara’s Cure have traveled the world to speak with clinicians and researchers including Dr. Kevin Jones, MD and Andrea Hayes-Jordan, MD who are furthering their research to help us understand what exactly needs to be done to find a cure for this rare disease. This video below focuses on the specific Sarcoma, Clear Cell. 

Happening Now

Featured Initiatives

Sara’s Cure is pursuing an ICD 10-Code with NORD (National Organization for Rare Disorders). The International Classification of Diseases (ICD) is important for insurance payments and gathering treatment data.

Sara’s Cure has officially initiated the first ever Clear Cell Sarcoma patient registry in partnership with NORD.
Sara’s Cure has officially gotten a clinical trial approved for CPI-613 (Devimistat) for treatment of Soft Tissue Sarcoma. This trial is set to take place by the end of this year (2020)

Sara’s Cure is pursuing an ICD 10-Code with NORD (National Organization for Rare Disorders). The International Classification of Diseases (ICD) is important for insurance payments and gathering treatment data.

Sara’s Cure has officially initiated the first ever Clear Cell Sarcoma patient registry in partnership with NORD.
Sara’s Cure has officially gotten a clinical trial approved for CPI-613 (Devimistat) for treatment of Soft Tissue Sarcoma. This trial is set to take place by the end of this year (2020)

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Our Top Funding Opportunities 

With the onset of the pandemic, our fundraising which was based on in-person activities came to a screeching halt. Previous to that, we were running up against the wall with the effort involved and the amount of money we were raising versus the number of projects we were able to fund. We have a clear vision of the next steps necessary to make a difference in CCS, and are very motivated to accomplish these goals.

Tissue collection and repurposed drug testing

The most pressing issue is identification of a beneficial treatment for Clear Cell Sarcoma. In this regard we are funding an organization that collects our patient tissue from biopsy or surgery and sends it to The Broad Institute of MIT and Harvard where they will grow cell and mouse models for repurposed drug testing. Since 2017 we have raised $202,000 for Repurposed Drug Testing and we need another $350,000 to complete the repurposed drug testing project over the next 2 years.  This will not only benefit Clear Cell Sarcoma patients, but it will benefit all Sarcoma patients for years to come.

Patient Registry

A Patient Registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure and that serves predetermined scientific, clinical, or policy purpose(s). We at Sara’s Cure have officially initiated our patient registry in January, 2020. NORD (National Organization for Rare Disorders) owns the registry platform. We are also in partnership with NORD establishing a first-ever  national history study.

Research

Dr. Andrea Hayes-Jordan has offered to join our cause to research for a cure for Clear Cell Sarcoma (CCS). The Hayes-Jordan lab will use single cell sequencing to precisely identify the genes that make CCS tumors grow and spread. We need to raise $50,000 dollars to fully fund this project.

Support Our Trial

A small pharmaceutical company in New Jersey is diligently working with the FDA on our behalf to start a first-ever Clear Cell Sarcoma combination drug trial. This collaboration was patient initiated and is patient driven. Sara’s Cure has been asked to help with the travel portion of this trial. Will you help a family by supporting travel expenses to a treatment? 

Make a Donation

$250,000 Raised

Since 2018

We have raised 250,000 since starting Sara’s Cure in May of 2018. So far, this money has enabled us to get researchers, regulatory and industry collaborating on Sarcoma. This collaboration is world wide and will have a great impact on all Sarcoma patients. See our financials here.

Get Involved

Upcoming Events

17

Nov

Blingo to Benefit Sara’s Cure

Come and play BLINGO with us! Raise money for Sara’s Cure and get some great Park Lane jewelry for yourself or gifts. 100% of the ticket proceeds will be donated to Sara’s Cure!  What’s BLINGO? It’s bingo but with jewelry prizes! $10 gets you in to play! 2 Bingo cards included. $20 to go All-In! This ticket includes 2 Bingo cards and 10 raffle tickets! ($35 value) Raffle Prizes are valued at least $100. The more tickets sold the more raffle prizes awarded. You’ll get 2 bingo boards to play along with us while you sip your drinks and eat your snacks at home! We’ll play at least 7 games as well as get some great fashion tips. Your bingo board pics will be sent to you along with the link for the Zoom Online Party Room on the day of the event. Create and decorate your boards at home before play time.

19

Oct

Sara’s Cure “Race For Research” 5k

Sara’s Cure is hosting our 1st Annual 5k. Come on out and join us for family fun and a timed 5k. Jump Castles, food truck, music and more! Race times by Junction 311.   

06

Aug

Strike Out Sarcoma @ Charleston RiverDogs

Come join Sara’s Cure and the Charleston RiverDogs for a night of family fun! We are teaming up to Strike Out Sarcoma. Tickets are available for $10 each and proceeds benefit Sara’s Cure and our time sensitive mission to cure Clear Cell Sarcoma.  

“We have and will continue to work tirelessly for these young Sarcoma warriors. Your support will help us keep this promise.”

- Lennie Woods