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The President’s Corner
As Sarcoma Awareness Month swings into full gear, I am thrilled to welcome four new members to our Board of Directors: Michael Rhine, Tim Opsal, Evan Phillips and Natasha Serrano. You can read more about these incredible individuals and their connections to sarcoma below and on our website.
In this edition of our newsletter, we also spotlight new Board member Natasha Serrano, who is both a mom extraordinaire and rare disease advocate. Natasha's advice to sarcoma caregivers, and in particular parents of children with sarcoma, is particularly resonant as we work to spread sarcoma awareness this month.
Speaking of sarcoma awareness, I want to encourage everyone to join us for this year's virtual Sarcoma Exchange, which will focus on the critical tools of self-advocacy. As anyone who has been diagnosed with a sarcoma -- and anyone who has helped a sarcoma patient -- soon realizes, it is vitally important to develop effective self-advocacy skills in this complex and challenging medical realm.
We thank Julie Johnson and Meredith Berger, with technical support from Tim Opsal and Evan Phillips, for their exemplary work on this year's program. We also warmly recognize the sponsors of this year's event: Genentech, Adaptimmune and Ipsen. Thank you all!
Join us for the 8th Annual Sarcoma Exchange, July 20th!
Registration is free, but space is limited.
The 8th Annual Sarcoma Exchange is a free virtual symposium designed for sarcoma patients, caregivers, survivors, physicians, and advocates. This year’s theme—“Knowledge is Power: The Basics in Becoming a Self-Advocate in Your Care”—focuses on equipping you with the tools to take an active role in your treatment journey.
When: Sunday, July 20th, 9AM – 12:30 PM PT / 12 – 3:30 PM ET
Where: Online via Zoom
Attendees will hear from experts and patient advocates on topics including understanding pathology reports, interpreting scans, navigating clinical trials, and accessing medical data. A patient panel will also share firsthand stories of self-advocacy in action.
A Zoom link will be sent following registration. Agenda subject to change as speakers and session details are finalized.
The Sarcoma Alliance would like to thank the generous sponsors supporting this year's Sarcoma Exchange!
Sarcoma Alliance News
Pictured left to right: Tim Opsal, Evan Phillips, Michael Rhine, Natasha Serrano
Welcoming New Board Members
We’re thrilled to welcome four new members to the Sarcoma Alliance Board of Directors—each bringing unique experiences, deep compassion, and a shared commitment to our mission of guiding, educating, and supporting those affected by sarcoma.
Tim Opsal is an entrepreneur, father, and proud husband of CIC-DUX4 sarcoma survivor Lindsay. His family’s journey fuels his dedication to supporting others facing sarcoma.
Evan Phillips is an entrepreneur honoring the legacy of his mother Cheryl, who bravely battled Ewing Sarcoma until her passing in 2024. He is committed to advancing the Alliance’s work in her memory.
Michael Rhine is a seasoned finance and operations executive who retired in 2022 to care for his wife Caroline during her treatment for metastatic leiomyosarcoma. Now, he’s focused on raising funds for sarcoma research and awareness in her memory.
Natasha Serrano is a pharmaceutical professional and passionate rare disease advocate, shaped by her experience as the parent of a child with epithelioid sarcoma. She’s dedicated to ensuring no patient or caregiver feels alone.
Please join us in welcoming Tim, Evan, Michael, and Natasha to the Board!
American Society of Clinical Oncology (ASCO) Annual Meeting
Board member Julie Johnson attended the 2025 American Society of Clinical Oncology (ASCO) Annual Meeting on behalf of the Sarcoma Alliance. While there, she connected with a wide range of pharmaceutical and technology companies, including Ipsen, Massive Bio, Immunocore, Inhibrix, and Deciphera, as well as fellow non-profit organizations. The event was a powerful reminder of the innovation and collaboration happening across the oncology community.
The meeting included almost 300 presentations or posters on sarcoma research! It is encouraging that many new treatments are being tested. You can search among the abstracts for specific types of sarcoma at https://www.asco.org/abstracts-presentations.
We’re energized by the many promising partnership opportunities that emerged and look forward to what the future holds for advancing support and resources for the sarcoma community.
Caregiver Spotlight
Natasha Serrano on Parenting Through Cancer
Can you share a bit about your family’s journey with epithelioid sarcoma and how it shaped your role as a caregiver? Our journey began 5 years ago with what seemed like a straightforward diagnosis—we were fortunate to get an answer quickly, which is not always the case with rare cancers like epithelioid sarcoma. At the time, I didn’t realize that getting a diagnosis would be the easiest part. What followed was a crash course in navigating a fragmented healthcare system, managing life-threatening uncertainty, and trying to parent and protect my 8-year old son through something I couldn’t control or fix.
Being a caregiver in this space changed everything about how I see medicine, advocacy, and what true support looks like. I had to become a researcher, a coordinator, an interpreter of medical language—and most of all, an unflinching advocate for my son for a system that wasn’t quite built to meet his needs.
What do you wish more people understood about being a caregiver to someone with a rare cancer like sarcoma? That it’s relentless. You’re not just emotionally supporting your loved one—you’re also navigating complex systems, managing appointments, advocating for timely care, and making high-stakes decisions, often with incomplete information.
And in rare sarcomas, you’re usually doing it without a playbook. There’s no standardized path or widely understood best practices. It’s isolating and exhausting! Caregivers often downplay their role because we’re just “doing what we have to do.”
In your experience, what are some practical tips that helped you advocate effectively for your child’s care? One of the most important things I learned was that effective advocacy starts with listening. As a parent, my instinct was to protect and fix, but I had to make intentional space for my son’s voice. That meant tuning in to both what he said and what he didn’t say, and recognizing that his needs, emotions, and preferences should guide the decisions being made. Advocacy isn’t just about speaking for someone—it’s about making sure they’re heard.
Here are a few practical tips that have been very effective:
- Center your loved one’s voice: Create space for their wants, needs, and boundaries—even when it’s uncomfortable. Their experience should shape the path forward.
- Get organized: Keep a centralized log of all scan results, pathology reports, treatment decisions, and provider notes. It helps ensure continuity in care—especially when switching teams or institutions.
- Ask “why not?”: If something isn’t being offered—like a second opinion, clinical trial consideration, or specific imaging—don’t be afraid to ask why.
- Stay persistent, not passive: Sometimes just being the person who follows up, sends the extra email, or flags something odd in a report can change the course of care.
- Build your circle: You don’t have to do this alone. Whether it’s other rare disease families, a nurse navigator, or a friend who shows up—community strengthens your advocacy.
How do you take care of your own mental and emotional health while supporting a loved one through such a difficult diagnosis? Truthfully, I haven’t always done this well. Caregiving can be all-consuming, and I didn’t hesitate to put my own needs on hold. Over time, I realized that my son didn’t just need me to be present and available, he was relying on me to be a steady hand and show confidence in our course.
What helped most was finding creative outlets to give my busy mind somewhere else to go. Quilting, chalking, and other crafting projects became ways to ground myself and reclaim a little peace amid the chaos. I have also learned to be intentional with boundaries by protecting time and energy when I can, even in small ways.
Connecting with others in the rare disease community reminds me I’m not alone in the emotional toll of caregiving. That kind of connection, while not formal therapy, is a lifeline.
Seth Johnson Rides On
An Update on His Mission for PEComa Awareness
Seth Johnson is continuing his mission to raise awareness and funds for the PEComa sarcoma community! We've highlighted Seth on his bike racing journey as he honors his wife, Harmony, a PEComa survivor.
Seth had the race of his life at Tulsa Tough in June, and placed 8th place overall! In May he completed the Rule of 3 in Bentonville, Arkansas
Let's cheer Seth on as he uses his passion for cycling to make a difference. Make a donation here to show your support for Seth, Harmony and the PEComa Awareness Races! Don't forget to choose PEComa Awareness Races as your donation designation.
Sarcoma News Corner
New Clues in Leiomyosarcoma
Researchers found two distinct types of leiomyosarcoma tumors—one more like muscle tissue, the other more like connective tissue. This could help doctors better understand the disease and make more accurate diagnoses. Read more
Ripretinib Shows Promise for GIST
A study found that the targeted therapy ripretinib works just as well as sunitinib for advanced GIST, offering patients another solid treatment option after the first round of therapy. Explore the study
Annamycin: Encouraging Results for Lung Metastases
A new drug called Annamycin helped shrink tumors or keep them stable in many sarcoma patients with lung metastases—and it didn’t harm the heart like similar chemo drugs often do. View trial results
Long-Term Hope for High-Risk Rhabdomyosarcoma
Ten-year results from a European study show that adding a maintenance phase after standard treatment helps kids with high-risk rhabdomyosarcoma live longer and stay cancer-free. See the results
A New Approach: Injecting Tumors Directly
A clinical trial is testing a new treatment that delivers chemotherapy straight into sarcoma tumors, using a formula that helps the drugs enter cancer cells more effectively. Check out the study
Interested in more sarcoma-related news? Follow us on Facebook to stay up to date on the latest happenings in the sarcoma landscape, including cutting edge research.
Get Involved!
The Sarcoma Alliance is looking for passionate individuals interested in fundraising & grantwriting and outreach & communications. There are a number of ways you can volunteer. Email info@sarcomaalliance.org to get involved!
If you are unable to volunteer your time, please consider making a financial donation to the Sarcoma Alliance!
