SFA CEO Brandi Felser Delivers Opening Remarks at the 2026 Sarcoma Advocacy Weekend Congressional Reception

SFA CEO Brandi Felser Delivers Opening Remarks at the 2026 Sarcoma Advocacy Weekend Congressional Reception

July 15, 2026

The Sarcoma Foundation of America welcomed advocates, Members of Congress, congressional staff, researchers, and partners to the 2026 Congressional Reception, marking the beginning of Sarcoma Advocacy Weekend in Washington, D.C. In her opening remarks, SFA CEO Brandi Felser reflects on the power of the sarcoma community to come together in support of a shared mission: to elevate the voices of everyone affected by sarcoma and advance policies that improve outcomes for people affected by sarcoma.

Advocacy Day Congressional Reception Remarks
Brandi Felser, SFA CEO

To the advocates who have traveled from across the country, to congressional staff, and to our elected leaders, thank you for your time, your partnership, and your commitment to improving the lives of patients and families facing sarcoma.

Tonight, before we talk about legislation, funding levels, or policy priorities, I want to talk about people. Because sarcoma is ultimately a story about people. It’s the teenager whose plans suddenly become appointments and scans. It’s the young adult who should be thinking about a career, a family, and the future, but instead is forced to learn the language of sarcoma. It’s the parent sitting beside a hospital bed willing to trade anything for one more treatment option. It’s the survivor who carries both gratitude and uncertainty every day. And it’s the families who carry the memory of loved ones who should still be here.

Sarcoma is rare, but for those who hear the words, “You have sarcoma,” it becomes everything. And because it is rare, too many patients face obstacles that those with more common cancers never encounter. They struggle to find specialists. They travel across states for care. They search desperately for clinical trials. They wait for research breakthroughs that may not come soon enough. Sarcoma encompasses more than 100 distinct subtypes, making research and treatment particularly challenging and reinforcing the need for continued federal investment, expanded trial access, telehealth, and survivorship support.

That is why we are here.

Tomorrow, our advocates will walk the halls of Congress carrying policy priorities. But tonight, we are carrying something far more powerful. We are carrying stories. Stories of hope. Stories of resilience. Stories of heartbreak. And stories that remind us what is at stake when decisions are made in Washington.

You will hear from remarkable individuals tonight. A researcher who will help us understand why investment in science is so critical for patients facing rare cancers. A survivor who knows firsthand what it means to fight for every opportunity, every treatment, every tomorrow. And a mother whose courage honors the memory of a daughter lost too soon and whose voice speaks for countless families forever changed by sarcoma.

Their stories are different. But together they tell one truth: We cannot afford to stand still.

Speaker: Dr. Christina Meyer
Speaker: Zach Ward, Clear Cell Sarcoma Patient, an ultra rare subtype of sarcoma
Speaker: Sabina Allen, mother of Natasha Allen, who passed away from Synovial Sarcoma. Natasha was a true advocate for sarcoma and her voice is still being heard across continents.

To our speakers, thank you for your courage, your honesty, and your willingness to share your experiences with all of us. Those stories are difficult to hear. They should be. Because behind every statistic is a face. Behind every funding decision is a family. Behind every delay is time that patients simply do not have.

Tonight, you’ve heard about the promise of research. You’ve heard about the reality of survivorship. And you’ve heard about the unimaginable loss that cancer leaves behind. The question is not whether these stories matter. The question is what we will do because of them.

Tomorrow, our advocates will visit congressional offices with four simple requests: continue investing in lifesaving cancer research, modernize access to clinical trials, preserve and expand telehealth, and strengthen survivorship support for the millions of Americans living with and beyond cancer.

These priorities are particularly important for sarcoma patients, who often face limited treatment options, barriers to clinical trial participation, geographic challenges in accessing specialty care, and lifelong survivorship needs.

For the sarcoma community, advocacy is not simply a civic exercise. It is a lifeline. Because it is rare, patients often face delayed diagnoses, limited treatment options, long journeys to find specialists, and too few clinical trial opportunities. Too often, rarity means invisibility. But tomorrow, we are here to ensure that rare does not mean forgotten.

The advocates joining us tomorrow are not professional lobbyists. They are patients, survivors, parents, caregivers, physicians, researchers, and loved ones. They are people who have sat beside hospital beds. People who have waited for scan results. People who understand what it feels like when hope depends on a breakthrough that does not yet exist. And that is why our message to Congress is both simple and urgent.

First, we must continue investing in cancer research. Every treatment. Every clinical trial. Every advance that has extended or saved a life began with research. Federal investments through the National Institutes of Health, the National Cancer Institute, and ARPA-H fuel the discoveries that make progress possible. For rare cancers like sarcoma, federal research funding is often the difference between a study moving forward and a study never happening at all. These investments are not line items in a budget. They are investments in lives, in innovation, and in the possibility of cures.

Second, we must modernize and expand access to clinical trials. For many people with sarcoma, a clinical trial is not a last option—it may be their best option. Yet families are often forced to travel hundreds of miles, miss work, pay for hotels, and shoulder enormous financial burdens simply to participate in research. Tomorrow, we will ask Congress to support the Clinical Trial Modernization Act so that access to potentially life-saving trials is determined by medical need, not by geography or financial circumstance.

Third, we must preserve and strengthen telehealth. For patients with rare cancers, expertise is often concentrated in a handful of specialized centers. Telehealth has transformed what is possible by connecting patients with experts regardless of where they live.
It means fewer hours on the road, fewer expenses for families, and faster access to specialized care. Most importantly, it means a patient’s ZIP code does not determine the quality of care they receive.

And finally, we must support survivors. Cancer does not end when treatment ends. Survivorship is a lifelong journey. Many sarcoma survivors live with long-term physical, emotional, and financial effects from treatment. They deserve coordinated care, patient navigation, workforce support, and resources that help them thrive—not merely survive. The Comprehensive Cancer Survivorship Act represents an important step toward ensuring that every survivor has the support they need long after treatment concludes.

Tomorrow, our advocates will walk the halls of Congress carrying these priorities. But they will also carry something more powerful than statistics or policy papers. They will carry their stories. Stories of courage. Stories of resilience. Stories of loss.
Stories have the power to change hearts. And when stories are paired with sound policy, they have the power to change lives.

To the members of Congress and congressional staff in the room, our ask is straightforward: Be champions for patients. Champion research because breakthroughs don’t happen by accident. Champion clinical trials because hope should never depend on a family’s bank account or ZIP code. Champion telehealth because expertise should be available to every patient, no matter where they live. Champion survivorship because surviving cancer should not mean navigating the future alone. And most importantly, remember the people whose stories you heard tonight and tomorrow when decisions are made in committee rooms, budget negotiations, and votes on the House and Senate floor.

Because someday, a child diagnosed with sarcoma may live longer because of a research grant you protected. A family may access a clinical trial because of legislation you supported. A patient may receive expert care without crossing the country because of a telehealth policy you advanced. And a survivor may thrive because Congress chose to invest not only in treatment, but in life after cancer.

That is the impact of leadership. That is the power of public service. And that is why we’re here. Tomorrow we advocate. Tonight we ask for your partnership. Together, let’s ensure that rare cancers are not forgotten, that every patient has access to hope, and that more families have the chance to create the memories that cancer too often steals away. Thank you for being with us, and thank you for standing with the sarcoma community.

To the advocates here tonight: thank you for lending your voice when it would be easier to stay silent. Your willingness to share your experiences creates impact far beyond a single meeting or a single day.

As we prepare for Advocacy Day, let us remember why we are here. We are here for the patient searching for an effective treatment. We are here for the parent who refuses to give up on their child. We are here for the survivor building a life beyond cancer. We are here for those we have lost—and for those whose lives can still be changed by the decisions made in this city.

Tomorrow, we will advocate. Tomorrow, we will educate. Tomorrow, we will build champions for the sarcoma community.

But tonight, let us celebrate the remarkable people in this room who make progress possible and who remind us that when patients, researchers, advocates, and policymakers work together, hope becomes action and action becomes change. Thank you, enjoy the evening, and let’s make tomorrow count.

Learn more about SFA’s Sarcoma Advocacy Day and ways you can participate and support the sarcoma community from wherever you are here.