Clear Cell Sarcoma Foundation

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Clear Cell Sarcoma Foundation

CCSF is a 501(c)3 nonprofit patient advocacy organization focused on funding research to find a cure

06/19/2026

Researchers are studying several new drugs and combinations in Clear Cell Sarcoma to better understand potential future treatment options. Most of this work is still early and investigational, including preclinical studies and small clinical trials.

Examples include:

Lurbinectedin (being studied for its effects on cancer cell activity)
Selinexor + lurbinectedin (a combination being explored in early research for potential activity)
Targeted therapies such as anlotinib and cabozantinib, which are also under investigation in CCS

👉 What this means: While CCS remains a challenging cancer to treat, researchers are actively exploring multiple approaches. These studies are important early steps in building evidence, but more research is needed to determine which, if any, of these strategies will improve outcomes for patients.

Read more here: https://www.clearcellsarcoma.org/research

06/17/2026

🔬 Research Saves Lives and so can you.

Our limited-edition Research Saves Lives shirt is more than apparel, it's a way to help fund the next phase of a promising clinical trial for Clear Cell Sarcoma (CCS).

After successfully and safely completing Phase 1 of our Devimistat + Hydroxychloroquine clinical trial (NCT04593758), we're racing against time to secure the drug supply needed to launch Phase 2. If we miss this critical window, this potential treatment could be shelved indefinitely.

💛 Every shirt purchase helps support this effort.

Even better, each shirt features a QR code that links directly to our fundraising campaign, turning every wear into an opportunity to raise awareness, inspire conversations, and connect new supporters to the CCS community.

👕 Limited edition, available through June 21
🌎 Ships worldwide

Purchase a shirt:
https://www.bonfire.com/research-saves-lives-shirt/

Donate directly:
https://givebutter.com/phase2trial

Can't purchase? Please share this post. Every share helps us reach new advocates, donors, and supporters.

06/15/2026

CCSF Champions are the heart of our foundation. They are survivors, families, friends, and community members who take action to champion our cause.

Whether it’s fundraising, hosting events, or becoming a recurring donor, every effort makes a difference. These champions are helping turn action into impact and advancing our mission to support those affected by Clear Cell Sarcoma.

One example is Ann Lopez, a CCS survivor who turned her personal journey into purpose after her diagnosis. Today, she serves as CCSF’s Marketing & Communications Director, using her experience to help raise awareness, amplify patient voices, and strengthen outreach across the CCS community.

Learn more here: https://www.clearcellsarcoma.org/get-involved/ccsf-champions

Join a community of advocates, survivors, and supporters making a real difference in the fight against Clear Cell Sarcoma.

To get involved, email: [email protected]

06/11/2026

Research in Clear Cell Sarcoma is focused on “targeted therapies,” which are drugs designed to block specific signals that help cancer grow.

Some CCS tumors appear to involve pathways such as MET signaling, and researchers are studying drugs that may target these mechanisms. Much of this work is still early and investigational, including studies in laboratory models and small clinical trials.

Examples of treatments being studied include lurbinectedin, lurbinectedin combined with selinexor, and targeted drugs such as anlotinib or cabozantinib.

Older drug (crizotinib) helped stabilize disease in some patients
Newer drug (vebreltinib) has shown tumor shrinkage in some patients with advanced CCS in an early clinical study, though longer follow-up is still needed
Side effects such as rash are being closely monitored

👉 What this means: Researchers are continuing to explore new ways to target the biology of CCS, but most approaches are still in early stages, and more research is needed to understand whether they will improve outcomes for patients.

Learn more about clinical trials here: https://www.clearcellsarcoma.org/research

06/10/2026

Survivorship is more than a milestone. It reflects every step of the journey including the diagnosis, treatment, recovery, and living beyond cancer. It is a reminder of the progress made in care and research, and of the communities that support patients and families along the way.

At CCSF, we stand with survivors and all those impacted by Clear Cell Sarcoma, celebrating their strength while continuing to push for awareness, research, and better outcomes.

This month and every month, we honor survivors and the lives they inspire.

Learn more about our warriors here: https://www.clearcellsarcoma.org/patients

We encourage you to share your story here: https://www.jotform.com/form/241687356781166

06/09/2026

If you or someone you love needs a place to stay while enrolled in a clinical trial or receiving cancer treatment, there is a free lodging resource that may help reduce one major burden during care.

The American Cancer Society operates the Hope Lodge program, which provides no-cost housing so patients can focus on treatment and recovery rather than travel and lodging logistics. Across the U.S. and Puerto Rico, Hope Lodge offers about 1,100 rooms in 31 locations.

These communities are designed for patients who must travel for care and need a supportive, safe place to stay during treatment periods.

Learn more or check availability here: https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html.

Support resources like this exist so no one has to go through cancer treatment alone or without practical help.

06/05/2026

Some studies are combining immunotherapy (which helps the immune system fight cancer) with targeted drugs.

One combination being studied is: nivolumab + sunitinib

Early results suggest:

- Longer time before cancer growth compared to chemotherapy
- Some patients benefit more than others
- Immune markers may help predict who responds best

👉 What this means: The immune system may play a bigger role in treating CCS than previously thought.

Read more about research studies in CCS here: https://www.clearcellsarcoma.org/research

06/03/2026

Big things are coming at the Clear Cell Sarcoma Foundation 🎗️

We’re proud to announce the upcoming launch of our CCS AYA (Adolescent & Young Adult) Advocate Team — a new initiative dedicated to empowering young voices within the CCS community.

AYA patients and survivors experience challenges that are unique, complex, and often overlooked. Their stories, perspectives, and leadership are essential in shaping the future of awareness, research, and support for clear cell sarcoma.

This team will create space for:
✨ Advocacy
✨ Storytelling
✨ Connection
✨ Leadership
✨ Community support

We believe the next generation of advocates will help drive meaningful change and bring even greater visibility to this ultra-rare cancer.

Stay tuned — we can’t wait to introduce you to this incredible group. 💛

06/01/2026

We are currently inviting clear cell sarcoma survivors and patients to share their experiences. These stories help shine a light on this rare disease, honor those affected, and strengthen the community working toward better treatments and a cure.

If you or a loved one has been impacted by clear cell sarcoma and would like to share your journey, we would be deeply grateful to hear from you.

Submit here: https://www.jotform.com/form/241687356781166

Your voice matters. Your story can make a difference. 💙

05/29/2026

Training immune cells to find cancer -->

Researchers are testing a new type of treatment that “guides” immune cells directly to cancer cells.

One example is Tebentafusp, which:

- Directs T-cells to attack cancer cells more precisely
- Is already approved for another rare cancer
- Is now being tested in CCS clinical trials

👉 What this means: Instead of broadly stimulating the immune system, this therapy helps immune cells find the tumor more directly.

Read more here: https://www.clearcellsarcoma.org/research

Learn more about Phase II trial of Tebentafusp here: https://clinicaltrials.gov/study/NCT06942442?cond=Clear%20Cell%20Sarcoma&aggFilters=status:rec&rank=2

Address

PO Box 13418
Charleston, SC
29422

Telephone

(843) 501-2055

Website

http://www.clearcellsarcoma.org/, https://linktr.ee/clearcellsarcomafoundation

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