We Cannot Stop Advocating for Sarcoma

It is with a very sad heart that I share that our colleague and friend, Katie Wintergerst, has passed away.

Katie was a bright light and a fierce advocate for the sarcoma community. Before joining the Sarcoma Foundation of America (SFA) staff, she was a founding member of the Louisville Race to Cure Sarcoma, serving as Co-Chair for many years. She was a Courage Award Honoree at the 2023 Stand Up to Sarcoma Gala and participated in advocacy days on behalf of SFA and the broader sarcoma community. She raised awareness through social and traditional media, often appearing on local television stations, shared her story on SFA’s Sarcoma Stories podcast, and helped build and strengthen her local sarcoma community.

Just one year ago, Katie joined SFA as Director of Engagement and Advocacy. In that short time, she connected with countless people across the sarcoma community. She became the lead for SFA’s Sarcoma Match mentor program, co-hosted the Sarcoma Stories podcast, and provided support and guidance to individuals navigating their sarcoma journeys.

During Sarcoma Awareness Month in July, Katie helped make Sarcoma Advocacy Day a success by scheduling meetings and connecting advocates who joined us in Washington, DC. Her work leaves a lasting legacy of impact.

Sarcoma advocacy was the most important work in Katie’s life outside of her children, family, and friends. Even after learning that her synovial sarcoma and MDS could no longer be treated, Katie continued to contribute and support others until just two days before she passed away. Her commitment to changing outcomes for others and putting people before herself never wavered.

Above everything though, Katie was my friend.

She was one of the first advocates I met when I started at SFA. We shared the same hometown, and whenever I traveled to Louisville to visit family, Katie, Connie, and I would spend hours over lunch or dinner catching up and strategizing about how we could raise more awareness and create even greater change.

Over the years, Katie and I talked through many aspects of her sarcoma journey. I connected her with Dr. Brian Van Tine, who became an integral part of her care for more than eight years. Brian would occasionally send me emails that simply said, “Our girl is doing good,” or “Good news for our girl this week.” Those messages always brought comfort because I knew Katie was in good hands.

She faced setbacks, but she never lost her positive spirit.

When Brian passed away last year, we worked together to help Katie find a new care team and hoped there would be an option that could address both the sarcoma that had begun growing again in her lungs and the MDS she had recently been diagnosed with.

We talked often about her children, who would occasionally pop into Zoom meetings just to say hello. Her MDS required daily platelet transfusions, yet Katie never stopped showing up. She joined calls, answered emails, and attended meetings whether she was at home, in a doctor’s office, or in the hospital.

The doctor’s office became her office away from home. The medical staff grew accustomed to seeing Katie working between appointments. They often asked if she was on a call before approaching her, and she never missed a beat.

I looked forward to seeing her on our Monday morning staff calls. She was always one of the first people to get the conversation started. We connected daily, talking about big ideas and day-to-day work to ensure we were serving the sarcoma community as effectively as possible.

I trusted Katie’s judgment completely and often sought her advice. At one point, we discussed her taking on a different role working more closely with Cheryl and me in the Executive Office. I still remember her telling me no because she “wouldn’t be around to do the job.” I moved her anyway.

Because we never stop hoping, do we?

Having already been through two end-of-life experiences, I still hoped that maybe not this time. Maybe a miracle would come at the last minute. To borrow the words of a colleague and friend I deeply respect, “This can’t possibly be happening again.”

Right now, I am feeling defeated. But I have learned, and am still learning, that we can either embrace defeat and give up, or we can double down and work even harder.

But this isn’t just about Katie.

This is about every single person, child or adult, young or old, whom we have lost to sarcoma. It is about the people still on their journey, still waiting for the next breakthrough, still hoping their treatment will work. It is about every family whose life has been forever changed by a diagnosis. It is about the people still in treatment, still searching for options, still hoping for more time. And it is about those left behind, carrying both the love and the loss of someone who should still be here.

For years, I disliked using the word hope or saying that SFA provides hope. I thought hope was not a strong enough action verb. Yet I have been reminded again and again how essential hope truly is. Hope is what carries us through the hardest moments. Hope is what carries us through the days when the future is uncertain. Hope is what keeps patients fighting, families advocating, and communities coming together when the odds feel overwhelming.

I carried hope until my parents passed away. I carried hope until Katie passed away. And I know many of you reading this carried hope for someone you loved. You hoped for one more treatment, one more clinical trial, one more birthday, one more holiday, one more conversation. Some of those hopes were realized, and some were heartbreakingly not.

But we can’t give up. We can’t be defeated. We can’t walk away to never think about sarcoma again, because that certainly would be easier.

If change is going to happen, we have to make it happen. We have to carry our grief, our disappointment, our anger, and our sadness, and turn them into action. We have to push for more research, more treatment options, more advocacy, more awareness, and ultimately, better outcomes for every person facing sarcoma.

We can carry our heartbreak, disappointment, anger, and sadness with us and use them as fuel for the work that still must be done. Every person we have lost deserves that. Every person still facing sarcoma needs that.

So whether you are a survivor, a caregiver, a parent, a family member, or someone grieving a loss, I ask you to turn hope into progress. Like so many others, Katie dedicated her work to ensuring others had a better chance than she did. That work belongs to all of us. Let’s carry it forward together. For the people we miss every day. For the people still fighting. And for the day when no family has to endure this loss again.

Share your experience. Tell the story of the person you love. Raise awareness in your community. Join an advocacy effort. Support research. Reach out to someone newly diagnosed. Find a way, however big or small, to turn your experience into action.

Championing Better Treatments and Outcomes for People with Sarcoma

Brandi Felser, CEO

Last month SFA hosted our annual Stand Up to Sarcoma gala. Once again, it was an impactful event filled with meaningful discussion, opportunities for new connections, and celebrating progress. Like our Race to Cure Sarcoma events, the gala brings together diverse members of the sarcoma community. Listening to the journeys of the patients and survivors and applauding the work of our honorees always connects me to why SFA’s mission is so important.

Our mission is to improve outcomes for people diagnosed and living with sarcoma. Our entire organization is passionate, and laser focused on achieving that mission. A central focus is advancing new and better treatment options. While we are the largest funder of research in the sarcoma community, that is only part of the equation. Not only are clinical trials often treatment for many sarcoma subtypes, but they are also necessary to advance therapy approvals. That’s why SFA works closely with our industry partners to provide the patient voice, share information with patients and facilitate access through our Jordan’s Dream Fund program to advance clinical trials.

In the last several years, we have seen increased options for sarcoma clinical trials and increased FDA approvals, some for rare subtypes. But we have also seen many potential therapies fail. Either because they did not show efficacy or because of barriers rare cancers encounter.

We appreciate the investment from industry in a rare cancer like sarcoma and we encourage more. But the reality is, the rarity of sarcoma poses challenges other cancers do not face and industry investment alone will not fix that. Aside from the challenges associated with traveling to sarcoma centers for expert treatment, a limited number of trials, and open trials have limited sites. Current regulatory processes create barriers to FDA approvals and industry investment.

There is currently no single effective approval pathway for rare cancers like sarcoma. Realizing better and less toxic therapy options must include working closely with legislators and regulatory bodies to develop and implement fit for purpose approval pathways, recognizing that more than one approach may be needed. We, the sarcoma community, must have a voice in the creation of these processes. SFA is leading the way in ensuring our voice is amplified in the places where decisions are being made. Our Sarcoma Advocacy Day is one part of ensuring our voices are represented. We also work behind the scenes with other organizations, policy makers, and public policy experts to insert the voice of the sarcoma community, so we are not left behind.

Earlier this year, I participated in a roundtable that produced a whitepaper with recommendations to lawmakers on how we can improve the regulatory process for rare cancers like sarcoma. This paper has been provided to our lawmakers on capitol hill with ongoing discussions about how we can affect necessary changes. We recently submitted formal comments to the FDA in response to their draft guidance to industry on Approaches to Assessment of Overall Survival in Oncology Clinical Trials. Our position is clear; this guidance, if not framed with rare cancers, like sarcoma, in mind, could significantly impact the potential for new sarcoma treatments to be developed It is necessary that the sarcoma, and rare cancer, voice is included.

As the largest sarcoma organization representing all subtypes of sarcoma, we understand the strategies necessary to improve outcomes. We will not stop until there are better, less toxic, and more accessible treatments for every person diagnosed with sarcoma. Our mission is clear, and we remain fully committed to making meaningful progress.

SFA to Honor Actor and Sarcoma Survivor Andrey Ivchenko

The Sarcoma Foundation of America is proud to recognize SAG Award-nominated actor and sarcoma survivor Andrey Ivchenko as the recipient of the 2025 Amira Yunis Courage Award, to be presented at this year’s Stand Up to Sarcoma Gala in New York City.

Best known for his unforgettable role as Grigori, the formidable villain in Season 3 of the global Netflix hit Stranger Things, Andrey has also appeared in Lucifer, Counterpart, and Call of Duty: Black Ops Cold War. He has built a career playing physically commanding characters. But in 2024, he received a diagnosis of chondrosarcoma, a rare bone cancer with limited treatment options.

His journey included major surgery to remove half of his pelvis, which was replaced with a custom 3D-printed titanium implant and hip replacement. It marked the beginning of a life-changing chapter defined by resilience and recovery.

A Platform for Change
After his diagnosis and treatment, Andrey shared his story publicly through interviews and social media, helping to raise awareness of a cancer that too often goes unnoticed. His openness has helped demystify sarcoma and amplify the needs of people diagnosed and living with sarcoma.

The Amira Yunis Courage Award
Each year, SFA presents the Amira Yunis Courage Award to someone who uses their voice and advocacy to elevate sarcoma. Named in memory of Amira Yunis, a former SFA board member and advocate, the award honors individuals who bring visibility, compassion, and strength to the sarcoma community. In 2025, Andrey Ivchenko will join this inspiring list of honorees.

Stand Up to Sarcoma Gala 2025
Andrey will be honored during the 23rd annual Stand Up to Sarcoma Gala, held on September 15, 2025, at 583 Park Avenue in New York City. The event brings together patients, caregivers, researchers, and advocates to celebrate progress and raise funds for SFA’s mission. Net proceeds from the evening will support 2026 research grants and patient education programs.

Celebrating a Story That Inspires
Andrey’s sarcoma journey is a story of courage and advocacy. By sharing his experience and accepting this award, he helps shine a light on sarcoma and inspire hope for those impacted by it. SFA is proud to recognize his contributions and to stand with him in building a future where more people survive after sarcoma. Added text.