Sara's Cure Clear Cell Sarcoma Foundation

What it reported doing in 2024

Summary of activities january- our executive director participated in a global webinar hosted by the sarcoma foundation of america to present a private/public partnership called cure drug repurposing collaboratory (cdrc), with the initiative to find existing drugs for rare sarcoma.: co-hosted our largest annual fundraiser in charleston sc. Continued to collaborate with the clinical/research community through monthly meetings with sarc, and the ccs tissue collection dod grant community of stakeholders. February & march teamed up with xcures to create a partnership contract for the purpose of collecting electronic health records on ccs patients, an outgrowth of the cdrc project. These real world results were presented at the annual sarcoma conference to the sarcoma community. Plans for expansion into 2025. April - inaugural meeting with dr. Kevin jones surgical oncologist to plan a first ever ccs symposium in charleston sc. September. This meeting is for the purpose of collecting real world experiences (rwe) from ccs patients through the xcures platform and publishing the data as a consensus of the natural history of ccs. May & june cdrc moves forward through our own funded xcures project. Patient families held fundraisers for ccsf including the society of hope fundraiser and the bob costello ccs golf tournament fundraiser to support the ehr data project. July & august- sarcoma awareness month initiatives were sent to educate the community through our newsletter and social media to get the word out about ccs. Continued data collection/analysis and preparation for the upcoming inaugural symposium. September - held the first annual international ccs patient clinician partnered ccs collaborative symposium. Patients met and shared stories in person and by zoom. The meeting was held virtually for our global community to attend as well. Two new initiatives around radiation therapy and patient data were born and will be programs for the 2025 research at the ccsf. October - we held a ccsf research team retreat to analyze ehr data submission and publish a retrospective study abstract for connective tissue oncology society (ctos) presentation in november. We met daily for collaborative and sometimes difficult work analyzing the data and forming it into charts that will drive clinical decision making based on rwe to help improve treatment outcomes. This retreat was with patient community involvement and is core to our mission. November - our ccs research team traveled to san diego to present first of its kind ccs electronic health record data (ehr).. Met with md anderson clinicians to discuss ccs care, met with sarc and clinicians from msk and royal marsden regarding a 2025 trial for ccs. We were able to give several talks to clinicians and researchers at the poster presentation session. We had small card prints to hand out to the oncologists throughout the annual conference. Our research was very well received and has led to further discussions and partnership opportunities. December - giving tuesday and fundraiser project to raise funds for the purchase of 2 new mouse models needed for the jones lab research off project. We successfully raised the funds needed, dr jones was able to negotiate a discount for us and we didnt have to pay any overhead costs.

Financial Efficiency

• Mission deployment rate: 100%; rating input score 100
• Program expense ratio: 100%; rating input score 100

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
• Major donor itemization: Yes; rating input score 100

Sustainability

• Operating margin: -14.1%; rating input score 27; 27th percentile among comparable filings
• Total-asset coverage ratio: 0.49; rating input score 29; 29th percentile among comparable filings
• Liabilities to assets ratio: Limited
• Officer compensation ratio: 0%; rating input score 56; 56th percentile among comparable filings

Growth

• Program expense growth: 1.6% per year; rating input score 100; 53rd percentile among comparable filings
• Revenue growth: -10.9% per year; rating input score 0; 23rd percentile among comparable filings
• Asset growth: -6% per year; rating input score 0; 22nd percentile among comparable filings