Sarcoma Foundation of America

Big Heart Fest is coming back to Chicago! Join the fun on Saturday, June 13 from 4–10pm at Chief O’Neill’s Pub & Restaurant for a special night of music, community, and celebration honoring John “Big Johnny” O’Brien and his joyful, generous spirit. This music festival is held in his memory and supports the Sarcoma Foundation of America, helping fund critical research and bring hope to those impacted by sarcoma. Enjoy live music, silent and live auctions, great food, and an evening filled with Big Johnny’s legacy of love and celebration. Find more information at buff.ly/Z39dZy1 #sarcoma #curesarcoma #sarcomafundraiser #chicagoevent

During National Cancer Research Month, we’re reminded that rare cancers like sarcoma are too often overlooked. Since 2000, SFA has invested more than $27 million in research, helping drive progress and expand treatment options. Research is the path forward and it’s at the heart of everything we do. As the largest private funder of sarcoma research, SFA remains committed to advancing discoveries and improving outcomes for every patient. Show your support for our work: buff.ly/qbt51NI   #sarcoma #curesarcoma #NationalCancerResearchMonth #SarcomaResearch

A new study has shown encouraging results for people living with tenosynovial giant cell tumor (TGCT), a rare tumor that can cause pain, limit movement, and damage joints. SynOx Therapeutics announced that its investigational treatment, emactuzumab, helped shrink tumors and improve symptoms in patients whose tumors could not be removed with surgery. Patients in the study also reported improvements in physical function and other quality-of-life measures. Unlike some currently available treatments that require ongoing therapy, emactuzumab is being studied as a short-course treatment designed to provide lasting benefit. These results are especially meaningful because TGCT is often described as “benign,” even though it can have a serious impact on daily life. For many people, surgery is not possible or may not fully resolve the problem. The company plans to seek regulatory approval in 2026. If approved, emactuzumab could become a new treatment option for people living with TGCT. #Sarcoma #CureSarcoma #TGCT #TenosynovialGiantCellTumor #SarcomaResearch

SFA was honored to participate in the Desmoid Tumor Research Foundation Ambassador Meeting in April, where CEO Brandi Felser spoke about the growing importance of patient engagement in drug development. We’re grateful to the DTRF team, ambassadors, and advocates for continuing to elevate patient voices and strengthen advocacy across the sarcoma community.

Colleen Forbes, RN, BSN, ONC of Duke University Hospital will be honored with the Compassionate Care Award at this year’s Stand Up to Sarcoma Gala. She brings both expertise and genuine compassion to her work by providing thoughtful care coordination, clear education, and steady support for patients throughout their sarcoma journey. Colleen is committed to improving access to care, strengthening communication across multidisciplinary teams, and ensuring patients and families feel informed, supported, and cared for every step of the way, Over the years, she has been actively involved in creating, planning and implementing sarcoma awareness events, including golf tournaments, walk/runs, and patient appreciation tables, helping foster connection, support, and advocacy within the sarcoma community. Join us in celebrating Colleen and our other honorees:standuptosarcoma.curesarcoma.org @DukeOrtho @DukeCancerInstitute. #CompassionateCare #OncologyNursing #StandUpToSarcoma #CureSarcoma #Sarcoma #StandUpToSarcoma

Clear Cell Sarcoma (CCS) is an ultra-rare and challenging cancer, and finding effective treatments has been an ongoing area of research. A recent Phase II clinical trial published as part of the IMMUNOSARC II Master Trial tested a combination of sunitinib and nivolumab in patients ages 12–80 with confirmed CCS: What they found: •50.1% of patients were progression-free at 6 months •14.3% of evaluable patients had tumors shrink (partial response) •66.7% achieved stable disease •6.2 month median progression-free survival •17.0 month median overall survival The researchers also found that certain features in a patient's tumor may help predict who is most likely to respond well to this treatment. This could one day help doctors choose the best therapy for each patient. While further studies are needed, these results are a meaningful step forward for patients and families affected by this rare disease. #SarcomaResearch #ClearCellSarcoma #Immunotherapy #Oncology #CancerResearch #RareCancers

May is National Nurses Month. Nurses are the unsung heroes in every sarcoma story, walking beside patients and families through their hardest, most uncertain moments, offering comfort and a steady presence so no one ever has to face sarcoma alone. Honor a nurse who has touched your life with a tribute gift this month. It’s a heartfelt way to say thank you and recognize the compassion and love they pour into our community every single day. Give a gift: curesarcoma.org/nurse-apprecia… #NationalNursesMonth #ThankANurse #Sarcoma #CureSarcoma

Tickets for the 2026 Stand Up to Sarcoma Gala are now available! Now in its 24th year, this special evening brings together the sarcoma community from across the country and around the world to celebrate progress, honor loved ones and stand in solidarity with sarcoma patients and survivors. More information: buff.ly/gACoo92

On this episode, we speak with SFA Director of Europe’s Strategy and Engagement, Pan Pantziarka. While he is an incredible staff member at SFA who supports SFA’s global work, he also has a sarcoma story of his own as a care partner to his son, George. After George was diagnosed with three different primary cancers and passed in 2011, Pan quit his job in the corporate sector and found work in oncology. He is committed to making a difference using everything he can - scientific training, advocacy, and demand for change. He speaks to us today about rare cancer predispositions, such as Li Fraumeni Syndrome, the story of George and his mother, why knowledge is power, and where he finds hope. We are so lucky to not only have this conversation with Pan, but to have him on the team at SFA, striving for answers for sarcoma patients and their families. Listen wherever you get podcasts. #sarcoma #curesarcoma #sarcomastories

Missed our Live Virtual Session with the Experts? The recording is now available on YouTube! Watch to learn what biomarkers are, how they’re discovered and validated, and the different types of tests used in sarcoma. We also break down how results are interpreted and how they can guide personalized treatment strategies. As biomarker testing becomes more integrated into care, understanding this information can help patients and families better navigate treatment decisions and clinical trial options. Watch now: buff.ly/XQP0mAI #sarcoma #biomarkers #cancereducation #patienteducation #precisionmedicine

A huge thank you to @USWorldMeds for becoming the very first sponsor of the 2026 Stand Up to Sarcoma Gala. Your support means more than just a sponsorship, it’s a commitment to every patient, family, and loved one impacted by sarcoma. Because of you, this night will do more, reach further, and bring us closer to better treatments and outcomes. Join us in turning hope into action and stand alongside a community dedicated to change. Become a sponsor today: standuptosarcoma.curesarcoma.org/?form=sponsor #sarcoma #curesarcoma #standuptosarcomagala

Navigating sarcoma can feel overwhelming, but you don’t have to do it alone. SFA offers a range of support and resources for patients, caregivers, and families from financial assistance to peer-to-peer mentoring. Explore what’s available and find the support you need: buff.ly/RNUgpLf #Sarcoma #SarcomaSupport #SarcomaResources #CureSarcoma

“I’m still learning how to live after learning how to survive.” At 14 Rohini Deivasigamani was diagnosed with Ewing Sarcoma. In honor National Minority Cancer Awareness Week, Rohini shares her story of resilience, the realities of treatment, and the lasting impact cancer has had on her life. From navigating difficult decisions and intense side effects to coping with loss and survivor’s guilt, her experience reflects challenges many patients face—especially those diagnosed at a young age. #MinorityCancerAwarenessWeek #Sarcoma #SarcomaSurvivor #CureSarcoma

Our Live with the Experts session on biomarkers is happening this week! Join us as we dive into overview of biomarkers, what they are and how they are discovered and validated. During the session we will highlight the different types of biomarker tests used in sarcoma, how results are interpreted, and how this information can guide personalized treatment strategies. As biomarker testing becomes more integrated into patient care, understanding biomarkers and how they can be used in treatment planning can help patients and families better navigate their treatment and clinical trial options.  Register:buff.ly/zu6bpXv #Sarcoma #SarcomaAwareness #BiomarkerTesting #PrecisionMedicine #CureSarcoma #ClinicalTrials #Oncology

Join us in Washington, D.C. this July for Advocacy Weekend 2026! Stand with the sarcoma community as we meet with lawmakers on Advocacy Day, learn together on Education Day, and come together at the Race to Cure Sarcoma DC to raise funds for lifesaving research. Together, we can drive change and move closer to better outcomes for everyone affected by sarcoma. Find more information at buff.ly/MSmLDXl #sarcoma #curesarcoma #canceradvocacy #advocacyweekend

Join us for the 2026 Philadelphia Marathon Weekend, Nov 20–22! Run past historic landmarks, through city streets, and along scenic waterfronts—all on a USATF-certified Boston Marathon qualifier course. By racing with SFA, you’re helping fund innovative sarcoma research and supporting patients and families. Our Marathon Teams have already raised nearly $120,000—let’s keep the impact growing! Interested in registering? Email ablake@curesarcoma.org #PhiladelphiaMarathonWeekend #RunPhilly #BostonQualifier #SarcomaAwareness #CureSarcoma #RunForACause #SFAMarathonTeam #Sarcoma

A new study co-authored by SFA CEO Brandi Felser highlights how the liposarcoma patient journey is often underrepresented in clinical data. Findings reveal delays in diagnosis, limited biomarker use, travel burdens to access specialized care, and a heavy reliance on peer support. Studies like this are an important step forward, but they also highlight a key limitation. There is still not enough patient-reported data to fully understand the breadth of experiences across sarcoma subtypes. Expanding this knowledge is essential to identifying unmet needs, improving care, and guiding research and advocacy efforts in a more patient-centered direction. Read full publication: buff.ly/bPJVFq6 #sarcoma #liposarcoma #curesarcoma #patientvoice #healthcareequity #patientadvocacy

We’re exhibiting in the Patient Advocacy Partners Pavilion at American Association for Cancer Research® (AACR) Annual Meeting 2026. Visit our booth (AP-1) to connect. #sarcoma #curesarcoma #AACR26 #sarcomaresearch

Join us for the next Live Virtual Session with the Experts! This session will provide an overview of biomarkers, what they are and how they are discovered and validated. During the session we will highlight the different types of biomarker tests used in sarcoma, how results are interpreted, and how this information can guide personalized treatment strategies. As biomarker testing becomes more integrated into patient care, understanding biomarkers and how they can be used in treatment planning can help patients and families better navigate their treatment and clinical trial options.  Register:buff.ly/zu6bpXv #Sarcoma #SarcomaAwareness #BiomarkerTesting #PrecisionMedicine #CureSarcoma #ClinicalTrials #Oncology

Join us on April 25 at The Fowling Warehouse in Omaha, Nebraska for Miles for Michelle’s first fundraiser. Enjoy a round-robin tournament, open lanes, a 50/50 raffle, silent auction, food for purchase, and more! This event is held in memory of Michelle Reeder, who passed away from hemangiopericytoma. All proceeds will go to Sarcoma Foundation of America’s mission to fund research and improve outcomes for those affected by sarcoma. Come out and support a great cause! More information: milesformichelle.com #sarcoma #curesarcoma #sarcomafundraiser