News
Monthly Newsletter
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In June 2024, we launched our monthly newsletter to keep the Clear Cell Sarcoma (CCS) community informed and connected. Each issue features the latest CCS research, foundation news, and inspiring community stories.
As of 2025, more than 700 subscribers worldwide receive our updates. Each click, read, and share helps raise awareness and shine a light on this ultra-rare cancer.
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💛 Join the CCS community and subscribe today!
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2024 Issues
2025 Issues
Upcoming Events
(POSTPONED)
ULTRA Target and Treatment Selection Meeting​​
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*We've been informed by the FNIH that the ULTRA Target and Treatment Selection Meeting has been postponed until further notice.*
We are excited that Clear Cell Sarcoma has been selected as one of just two ultra-rare cancers for therapeutic development through the ULTRA Program, a new public-private partnership currently in design by the Foundation for the National Institutes of Health (FNIH) in conjunction with NCI, NCATS, and FDA.
This milestone means that CCS is now on a national roadmap where the goal is not only to raise awareness, but to design and advance a new treatment. The CCSF team will be attending the upcoming Target & Treatment Selection Meeting which will determine the specific target for drug development. ULTRA is currently in the design phase and is targeted to move into its implementation phase in late 2026 – an important next step in advancing research that could help shape future treatments.
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Date: November 17-18, 2025
Location: Washington, D.C.
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Past Events
2025 CTOS Annual Meeting​
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The Connective Tissue Oncology Society (CTOS) is a global nonprofit organization uniting physicians, researchers, and medical professionals dedicated to advancing sarcoma treatment. Through collaboration, knowledge-sharing, and groundbreaking research, CTOS drives progress in connective tissue oncology to improve patient outcomes worldwide.
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The CCSF team is thrilled to attend this year’s CTOS Annual Meeting in Boca Raton, FL! If you’ll be in the area, stay tuned, we’re planning a CCS community meetup before the conference. More details coming soon!
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2025 Schmid Foundation Golf Tournament​
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We’re honored to announce that the Schmid Foundation, a 501(c)(3) dedicated to supporting educational causes since 2012 has selected the Clear Cell Sarcoma Foundation as the 2025 Annual Golf Tournament Honoree! This incredible opportunity comes thanks to Jackie Wardwell, wife of CCS warrior Rick O’Neill, who championed our cause.
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Registration is now open for the tournament, and our team will be there! If you’re near Clermont, FL, we’d love to connect with you on the green.
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Date: October 24, 2025
Location: 1690 Legendary Blvd, Clermont FL 34711
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Celebrating The Life of Josh Milner​
Join family and friends as they come together to celebrate the incredible life of Josh, a CCS warrior, a son, a friend, and light to everyone who knew him. This gathering is open to all who wish to honor his memory and the joy he shared with the world.
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A silent auction and donation opportunities will be available, with all proceeds benefiting the Clear Cell Sarcoma Foundation, supporting research, advocacy, and patient resources for the rare cancer that took Josh.
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The CCSF team will on site to help raise awareness and answer any questions about this often-overlooked cancer.
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Date: October 19, 2025
Time: 1:00 - 4:00 p.m.
Location: 670 Trabert Ave NW, Atlanta, GA 30318
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New Virtual AYA Meet & Greet​
By special request from one of our teen CCS warriors, we're thrilled to host a virtual meet & greet for Adolescents & Young Adults (AYA) diagnosed with Clear Cell Sarcoma.
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This interactive session offers a safe, welcoming space to connect with peers, share experiences, and gain support from others who truly understand the journey.
The event will be moderated by Jackie Woods, a cancer survivor who brings her unique perspective, having faced cancer as a teenager herself, and walking alongside her sister through her CCS journey.
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2025 SPAGN Annual Conference​
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SPAGN is the worldwide alliance of sarcoma patient advocacy groups, uniting 60+ member organizations across 5 continents to amplify the global voice of sarcoma patients. Together, we drive awareness, support, and change for the sarcoma community.
The SPAGN Annual Conference brings together advocates, researchers, and healthcare professionals to explore cutting-edge research and treatments, participate in patient support and advocacy sessions, network with global experts and fellow advocates as well as engage in interactive workshops and marketplace sessions. This year's conference marked a historic milestone, as it was co-hosted and co-funded by the National Cancer Institute (NCI), a powerful collaboration between leading researchers and the sarcoma advocacy community.
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As a new official member of SPAGN, CCSF proudly attended our first annual conference. Our team was honored to connect with oncologists, scientists, and advocates worldwide, sharing knowledge and raising awareness about clear cell sarcoma (CCS) on the global stage.​
The 14th Annual Bo's Roast & Chili Cook Off!
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The James Island Vikings hosted their much-anticipated annual Bo’s Roast & Chili Cook-Off, and CCSF was once again part of this incredible tradition, for the 4th year in a row!
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This year’s proceeds will benefit both CCSF and Islands Against Cancer, making it a great opportunity to enjoy fantastic food and drinks while supporting two worthy causes. Plus, CCSF hosted a silent auction with amazing items up for grabs!
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Spreading Awareness at CTOS 2024​
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The Connective Tissue Oncology Society (CTOS) annual meeting brings together international doctors, researchers, patient advocates, and medical professionals to share groundbreaking findings about sarcoma’s 100 subtypes.
For the past 5 years, CCSF has proudly attended this global event, and CCSF presented our poster: Clear Cell Sarcoma - Real-World Data Analysis, featuring medical data from 15 CCS patients. This presentation allowed us to raise critical awareness about this ultra-rare cancer among scientists, researchers, and physicians worldwide.
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Kendra Scott Gives Back​
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Did you know that Kendra Scott, the premium jewelry brand known for its elegant and stylish designs, is also recognized for its incredible philanthropic efforts? Since its founding, Kendra Scott has donated over $50 million to support local, national, and international causes. We couldn't be more excited that they have decided to select Clear Cell Sarcoma Foundation (CCSF) as their charity partner! On September 28th and 29th, 2024, 20% of all in-store and online purchases went directly to support our mission. We're truly grateful for their generosity and to everyone who made a purchase to help further our cause! ​
Symposium 2024​
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On September 6, 2024, the Clear Cell Sarcoma Foundation (CCSF) hosted its inaugural Symposium, focused on building a unified approach to advancing CCS research and treatment. Held in Charleston, SC, this one-day event brought together clinicians, scientists, patient advocates, CCS patients, and their families. The broader CCS community was able to participate via Zoom and submit questions directly to the speakers.
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