Closing Gaps, Improving Outcomes: Building Community Together

By Brandi Felser, CEO

Happy New Year!

2024 was quite a year for SFA and we are looking forward to 2025 and celebrating the
organization’s 25th year anniversary. In 2024, in addition to funding impactful research, we launched programs to increase our support and engagement with the sarcoma community: We partnered with the Association for Community Care Centers (ACCC) to provide tools and information for community oncologists. We launched a new website to increase resources for the community, and in late 2024 we launched the Sarcoma Stories podcast.

To date, we have released three podcast episodes and have recorded several more. Each story is unique, and we never know where the discussion will lead. But they are not just “stories”. We launched this podcast to highlight the voices of the people affected by sarcoma: to better understand the challenges they face and the things that matter most to them. We also launched this podcast to help people in our community connect, share resources, or simply find someone who understands their experience. I admit, I was not sure what to expect when we decided to launch this initiative. But this podcast has turned into so much more than I imagined.

We listen to and share stories from the sarcoma community on many different platforms. Because of this, there is so much I thought I knew about the challenges, obstacles, and what is important to people navigating a sarcoma journey. But through these deeper discussions, I have been humbled, brought to tears, laughed, and most importantly educated. I have learned even more about the gaps in patient support, resources, diagnosis and treatment, some I knew about and others are new to me. A portion of these conversations that you don’t hear are the SFA team asking questions, discussing gaps and how these gaps can be filled. SFA cannot do it all, but we can bring together the right stakeholders to create changes necessary for sarcoma patients, survivors and their loved ones to thrive. These discussions, like our Race to Cure Sarcoma events, are a reminder of why SFA exists. And what drives us each day.

2025 is about building community and infrastructure to improve outcomes.

We refreshed our mission statement and strategic goals in 2024 to be intentional about addressing critical gaps to improve outcomes. This includes improving diagnosis and treatment, patient resources and education, access to treatments and sarcoma specialty care centers, and public policy. This year, SFA will expand and increase our efforts to fund impactful research, grow awareness, engage in strategic partnerships, amplify the sarcoma voice on Capitol Hill, provide resources to empower people diagnosed to advocate and participate in their care, and work in partnership to fill gaps in diagnosis and treatments.

I hope you will continue to join us for this journey. We envision a world where no one dies from sarcoma – and we envision a world where SFA no longer needs to exist. 2025 may not be the year we put ourselves out of business, but we will continue to work toward that. #curesarcoma

Stand Up to Sarcoma Gala Recognizes Sarcoma Community

The Sarcoma Foundation of America’s 22nd annual Stand Up to Sarcoma Gala was a night of celebration and sense of community, hope, and unwavering dedication to supporting those affected by sarcoma. Supporters, patients, caregivers and their families came together to honor those who have dedicated their work to assist people affected by sarcoma and to the survivors and patients who inspire us every day.

We are grateful to the 2024 honorees, each of whom has made a unique and significant impact in the world of sarcoma: David Fajgenbaum, MD, MBA, MSc, received the Vision of Hope Award; Cristina R. Antonescu, MD, was honored with the Nobility in Science Award; Jaclyn Cardarelli-Matte, LICSW, accepted the Compassionate Care Award. Emily Oberst, Kelly Elmlinger, and Nate Hinze were presented with the Courage Award; and Sean Cincotta received the Amira Yunis Courage Award. Their individual stories of dedication, compassion, and bravery serve as a powerful reminder of why we stand up to sarcoma. Click here to learn more about this year’s honorees.

Actress and singer Krysta Rodriguez, who has graced both stage and screen in productions like “Halston” and “Smash” started off the evening with a heartfelt performance. During her performance, Krysta dedicated a song from “Into the Woods” a production she starred in with her friend and fellow Broadway star, Gavin Creel, who had passed from sarcoma on September 30, 2024. SAG Award-winning actress Caroline Aaron, known for her roles in “The Marvelous Mrs. Maisel” and “Ghosts,” guided us through this special night of celebration featuring extraordinary honorees and recognition of important advances in sarcoma science and research.

Thank you to everyone who joined us for this unforgettable evening and to the event sponsors. Your partnership and your shared commitment to making a difference in the lives of those affected by sarcoma are what make this event so special.

We hope you will join us next year for the 23rd Annual Stand Up to Sarcoma Gala, which will be held September 15, 2025.

Rare but Treatable: Sarcoma Care in the Community Setting

Nicole Colwell, MD (ACCC), and Brandi Felser, MBA

Sarcoma is a rare cancer that is estimated to affect just over 17,000 people in the US annually. It is currently estimated that 1% of all adult cancers and 15-20% of childhood cancers are sarcomas, arising either in bone or within soft/connective tissues.

This article originally appeared on the ACCC Buzz Blog. Read it in that location here.

Sarcoma is a deadly disease, but it doesn’t have to be. Currently, the overall survival rate from any form of sarcoma is 65%. Almost 60% of sarcomas are found when they are still a localized disease, for which the 5-year survival rate is up to 81%. When detected in more advanced stages, the 5-year survival rate decreases to 18% for those with locally advanced disease and to 16% for those who have metastatic disease. There are few treatments for patients with sarcoma, but they are available, and clinical trials and more research into new treatments are underway. Due to the rarity of these cancers and with over 100 different subtypes of sarcoma, most community oncologists will rarely, if ever, see or treat a patient with any form of sarcoma during the tenure of their career. This makes it all the more important for them to have trusted resources available if and when they are needed.

Promoting Awareness
For many patients, sarcoma can be a particularly difficult diagnosis because of its presentation with non-specific or confusing symptoms. Soft tissue sarcomas, for example, may initially present as a painless lump or swelling, which can easily be mistaken for a more benign condition. Bone sarcomas might cause bone aches, pain, or fractures which could be confused with other musculoskeletal problems. These factors highlight the need for heightened awareness among both patients and health care providers alike. Organizations such as the Sarcoma Foundation of America (SFA) are vital to address these unmet needs. The SFA aims to bridge any gaps in knowledge for clinicians and empowers patients to take an active role in their care.

To facilitate the process of diagnosis, treatment, and patient care, SFA has partnered with the Association of Cancer Care Centers (ACCC) to develop a multitude of resources about sarcoma for community clinicians, patients, and caregivers. This collaboration aims to ensure that health care professionals in the community setting have access to the latest research, treatment protocols, and clinical trial data. The ACCC/SFA partnership also aims to equip patients with information that can improve their quality of life and expand treatment options tailored to individual sarcoma types. For example, resources like webinars and educational seminars help clinicians stay up to date on emerging therapies and updates from key oncology meetings by sarcoma specialists. Meanwhile, clinical trial matching services connect patients to potentially life-saving trials that may otherwise go undiscovered.

Clinical trials are key to improving outcomes for patients with sarcomas. SFA has created a clinical trial matching service to provide easy-to-obtain information about potential trial eligibility for patients with sarcoma. SFA provides contact information for this service as well as the capacity to connect patients to the trial sites.

Treating the Whole Patient
Beyond medical treatment, the psychological impact of a sarcoma diagnosis should not be overlooked. Patients and caregivers often face an emotional and mental health burden that requires attention and support. Community oncology settings, where most sarcoma patients are treated, can provide an opportunity for holistic care that integrates psychosocial support, mental health resources, survivorship programs, and other supportive care options.

Though sarcoma presents significant challenges due to its rarity and complexity, there is hope on the horizon. Advances in research, better access to clinical trials, and increased awareness among clinicians are key factors in improving care for patients with sarcoma. The cumulative efforts of organizations like SFA and ACCC are helping to close the knowledge gap and ensure that both patients and oncology providers have the tools they need to make informed decisions. As awareness grows and research advances, progress is made towards the goal of better clinical outcomes. With ongoing dedication and collaboration between advocacy groups and community oncology care teams, the future looks brighter for patients with this rare but treatable cancer.

Nicole A. Colwell, MD, is a senior editor/medical writer for the Association of Cancer Centers (ACCC). Brandi Felser, MBA, is the Executive Director of the Sarcoma Foundation of America (SFA).

Five and Twenty-Five: Reflecting and Looking Ahead

Brandi Felser

Next year, the Sarcoma Foundation of America will celebrate its 25th anniversary. It is amazing to reflect on how far SFA has come – an organization that started by three passionate Founder’s thanks to an encounter at a medical meeting. Now, the leading private funder of research in the sarcoma community, the principal organization representing sarcoma patients’ voice on Capitol Hill, and the largest and most comprehensive patient advocacy organization representing all sarcoma patients regardless of subtype.

I joined SFA five years ago this month, but my personal patient advocacy journey started 14 years ago when my mother passed away from cancer. That is when I decided to turn my passion and personal experience into helping others. Then in 2019, just before joining SFA, I lost my father who also had cancer. I was both a primary care partner and a daughter helping her parents navigate a disease and a journey none of us understood.

I have been in the role of care partner, a daughter who lost her parents, and a person who had to quickly learn how to advocate for care, manage a health care system, make decisions with limited information and frankly, not know which decision was the right one. We experienced misdiagnosis, wait and watch until the waiting was too late, searching for answers and other options, and the overwhelming feeling that we did not know which way to turn. I realized then that I did not want anyone else to experience what my family had gone through.

Most importantly, the thing that sticks with me the most is the feeling that there was so much we did not know. A not uncommon experience in sarcoma – a devastating diagnosis coupled with a rare cancer with little information. Something I hear from people time and time again. And I have committed to doing all I can to ensure that SFA supports the sarcoma community so no one else has to share that feeling. I have spent time thinking about my journey and SFA’s 25th anniversary.

I thought how important SFA’s contributions have been over the years. And I wondered where sarcoma patients would be today if SFA did not exist. It is difficult to harness the impact SFA has had. It is inspiring to consider the impact we’ll have in the future. Your support continues to be an important catalyst to SFA’s ability to advance our mission and save lives. You may have noticed our logo and website look a little different. Over the last five years, I have engaged with the Board and staff on strategic planning work. Looking toward the future and mapping out our impact and role in the sarcoma community.

Our Board and staff have spent time reflecting on our accomplishments and planning ways SFA will expand our impact. What you see is a recognition of our leadership role in the sarcoma community and an outward representation of our commitment to expand our work to realize a future where no one else dies from sarcoma. Three months after I joined SFA, the world was devastated by the COVID-19 pandemic. And I was wondering how I was going to lead this amazing organization through one of the worst times in recent history so that we could continue our mission on behalf of people affected by sarcoma. Now, nearly five years later, SFA’s impact and growth has been remarkable. And that is because SFA has some amazing supporters. Your support has brought us to where we are today – the first line resource for all things sarcoma. Thank you for joining us, thank you for supporting us, thank you for investing in us. More importantly, thank you for your commitment to the many children and adults diagnosed, living with, and surviving sarcoma. I look forward to our continued work together to reach our shared goals. Together, let’s change the world for people affected by sarcoma. For me, this is personal.

Our Paralympian Heroes Shine Bright

The Paralympic Games have come to a close, leaving us with unforgettable memories of athleticism, determination, and the triumph of the human spirit. This year, sarcoma survivors represented the United States–and won medals–on the Men and Women’s basketball teams and Para-Triathlon events. Their determination, perseverance, and athleticism illustrates the strength and resilience of the sarcoma community. 

These athletes not only competed against the world’s best, but they also demonstrated incredible resilience and perseverance on their personal journeys. Their dedication and unwavering spirit serve as a beacon of hope for all of us. They are living proof that with courage and determination, anything is possible. 

We’re thrilled to recognize the following individuals who brought home medals: 

• Nate Hinze, Gold, Men’s Wheelchair Basketball 

• Hailey Danz, Gold, Para-Triathalon 

• Emily Oberst, Silver, Women’s Wheelchair Basketball 

• Bailey Moody, Silver, Women’s Wheelchair Basketball 

• Natalie Schneider, Silver, Women’s Wheelchair Basketball 

• Mark Barr, Bronze, Para-Triathalon 

All of the athletes have made us all incredibly proud. Their achievements remind us that within our community, we can achieve greatness. Let’s continue to celebrate their victories and support them as they inspire the next generation of athletes.