The Desmoid Tumor Research Foundation

Charting the Path Forward: 2026–2030 Strategic Plan

News

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Over the past year, we’ve taken a deliberate and deeply collaborative look at where DTRF stands, and where we must go next to better serve the desmoid tumor community. Today, we’re proud to share our five-year strategic plan for 2026-2030.

DTRF Executive Director – Katie Doyle Myers explains the collaborative nature of DTRF’s strategic planning process:

Stepping into the Executive Director role during this process allowed me to learn from voices across our community. This plan is stronger because of that collaboration, and a clear reminder that progress in desmoid tumors will only happen when we work together with a shared purpose.

This strategic plan was shaped by the voices of our community. Through more than three dozen conversations with board members, scientific and medical advisors, researchers, clinicians, patients, caregivers, and donors, we listened closely to the experiences and insights that define this disease. We also examined the broader rare disease and sarcoma landscape to understand where the DTRF can have the greatest impact.

What we heard was clear: progress is happening, but there is more to do, and DTRF has a critical role to play in accelerating it.

In recent years, the desmoid tumor field has reached important milestones, including the FDA approval of nirogacestat and a growing pipeline of promising therapies in clinical trials. The DTRF has been proud to help lay the groundwork for this progress, investing more than $4.2 million in research to better understand the biology of desmoid tumors, work that not only advances our disease, but may also unlock insights relevant to other rare diseases and even common cancers.

The role of our community has been just as important. Patients and caregivers have shared their experiences to inform research, guide education, and advocate for change. They have also fueled this work through grassroots fundraising and philanthropy. Our Board of Directors, who bring lived experience with desmoid tumors alongside deep professional expertise, have helped translate that collective perspective into a focused and actionable plan. Our scientific and medical advisors continue to push the field forward, driving toward more and better treatment options, collaborative efforts, and ultimately, a cure.

Throughout this process, we refined both our vision and our mission. Our vision is a shared one: to cure desmoid tumors. It is ambitious by design, and it belongs to all of us. Our mission clarifies how the DTRF will help get us there. We are committed to accelerating research, providing evidence-based education and information for patients and clinicians, and convening our community to foster collaboration, connection, and progress. What’s new in this plan is the intentional integration of these efforts, ensuring that each informs and strengthens the others.

We have also set a bold goal: by 2030, DTRF will invest more than $1 million annually into desmoid tumor research. Reaching this level of investment will allow us to fund critical early-stage ideas, support promising clinical research, and continue attracting scientific talent to this field.

DTRF’s Board Chair – Yating Wong shares about the impact of the planning process and gratitude for everyone involved:

This strategic plan establishes a clear trajectory for the future of the DTRF. It sharpens our organizational focus, catalyzes action across our multi-stakeholder community, and ensures that everyone impacted by desmoid tumors feels more informed, supported with evidence‑based care, and—most importantly—never alone in this fight. I’m energized by what’s possible when we align our priorities, deepen collaboration, and invest boldly in the pursuit of a cure. My sincere thanks to Katie and to everyone who contributed to developing this clearcut plan, and to all who will help bring it to life.

We are deeply grateful to everyone who contributed their time, perspective, and passion to this work. This plan is stronger because of you, and it is only possible because of you. The next five years represent an important moment for the DTRF.

We are ready to move forward, together.

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As a member group of the Sarcoma Patient Advocacy Global Network (SPAGN), the DTRF is excited to share the new 2026 Lay Summary of the Global Consensus Paper on the management of desmoid tumors, originally published in JAMA Oncology in 2024.

While the scientific article (only accessible with a JAMA Oncology subscription) was written for clinicians and researchers, the new lay summary translates its key messages into clear, accessible language for patients, families, and advocates.

Highly technical medical publications are essential for advancing care, but they are often difficult for non-specialists to interpret. Creating a lay summary helps bridge this gap by explaining complex medical information in a way that supports better understanding, informed conversations with healthcare teams, and stronger patient advocacy.

We are grateful to SPAGN for their dedication and collaboration on this impactful resource. Special thanks to DTRF Medical Advisory Board Member, Professor Dr. Bernd Kasper for his careful review and commitment to finalizing this invaluable tool for the desmoid community.

At the DTRF, we encourage patients and caregivers to review, download, and share this important document with your medical care team. 

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Last year, we came together to correct a critical misconception that desmoid tumors are NOT benign. This year, we are building on that momentum to go one step further and make sure the correct classification of desmoid tumors is front and center.

The medical community, research publications, and other sources often use differing terms when describing desmoid tumors. This confusion can lead to misunderstandings about treatment and minimizes the potentially serious consequences of this rare disease.

How are desmoid tumors classified?
Desmoid tumors (also known as aggressive fibromatosis, desmoid fibromatosis, and desmoid-type fibromatosis) do not metastasize. They are classified by the World Health Organization (WHO) as  “Intermediate (locally aggressive)” soft tissue tumors. They do not fall under “Benign” or “Malignant” classifications.

Learn more about the World Health Organization’s (WHO) classification of desmoid tumors, which is listed under Table II: Fibroblastic/Myofibroblastic Tumours.

How can you help Spread the Word?

  • Engage with us by sharing our all the campaign content with your social media networks.
  • Watch a recording of our Spread the Word educational webinar: “How Desmoid Tumors are Classified and Why It Matters for Patients.”
  • Amplify patient voices by watching and sharing our live event recording—featuring desmoid warrior, Morgan B.
  • Educate your community by sharing trusted resources from DTRF.org.
  • Learn more by visiting our “What is a desmoid tumor?” page.
  • Contact our team if your current medical institution or clinician uses an incorrect classification on their website or within their practice.
  • Support our mission by making a donation!

Join us today. Use your voice and help us Spread the Word on behalf of the desmoid patient community!

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Dear DTRF Community,

After much reflection and with immense gratitude, I am writing to let you know that I have tendered my resignation as Executive Director of the Desmoid Tumor Research Foundation (DTRF) in June, and will be stepping down on December 31, 2025.

Leading the DTRF over the past two years has been the most meaningful, challenging, and deeply rewarding experience of my professional life. I have grown so much personally, and I’m so proud of what we’ve achieved together as a community since I accepted the position in November of 2023. Since that time, we’ve hosted our first September Weekend outside of Philadelphia, we’ve aligned with and amplified the patient experience powerfully through our Spread the Word campaign, and we’ve launched an Ambassador Program for patients to serve their own local communities with education and resources. This is only the beginning.

From the inside, I see that the DTRF has reached an exciting inflection point, and after months of working with our Board of Directors, I’m excited to announce the hiring of a new executive director who will mark the next chapter in the Foundation’s growth. 

The path ahead holds incredible opportunities to advance research, elevate patient advocacy, and expand our impact within the desmoid community. I’m so clear that with fresh perspective and new leadership, the DTRF is poised for the next phase of its evolution—and I am so excited for what lies ahead for all of us. 

At the end of the year, I will pass the baton to Katie Doyle Myers, who has decades of experience in executive leadership and lived experience with a desmoid tumor. She has fundraised for the DTRF since being diagnosed in mid-2023 (she is currently being monitored), and has been a guiding light over the past two years as the Foundation has continued to evolve internally. During November and December, I will work closely with Katie, the Board of Directors, and our staff to ensure a smooth and intentional start to 2026.

The DTRF continues to be the leading convener of the desmoid tumor patient and professional communities, with a dedicated team, a clear mission, and a community of supporters like you who make this work possible. I’m ready to watch DTRF evolve and thrive in the years ahead.

Thank you for your continued partnership and trust in the Foundation. 

Only looking forward,

Lynne Hernandez

DTRF Executive Director

Dear DTRF Community, 

As the DTRF enters its next chapter, I am filled with deep gratitude and excitement to step into the role of Executive Director. The success of the DTRF over the past twenty years is extraordinary. Under the leadership of Marlene Portnoy, Jeanne Whiting, and Lynne Hernandez, the Foundation has exemplified relentless patient advocacy, steadfastly advanced research, and achieved what many thought of as impossible. And — as I have heard these remarkable women say many times — we’re just getting started. It is a true honor to carry this legacy forward.

From its earliest days, the DTRF has been of and for desmoid tumor patients and their caregivers. At the heart of the Foundation is a connected, supportive community where no one faces this rare disease alone and every voice helps advance science and care. I experienced this firsthand when I was diagnosed with a desmoid tumor. It feels profoundly meaningful for me to bring together my personal connection to this cause and my professional experience in nonprofit leadership.

I look forward to meeting all of you whose dedication drives DTRF’s mission, and to working together to advance our shared goal: a cure for each and every desmoid tumor patient.

With gratitude, 

Katie Doyle Myers

Incoming DTRF Executive Director

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A growing national conversation around the urgent needs of rare disease patients is shining a spotlight on the realities desmoid tumor patients know all too well: research moves slowly, but desmoid tumors don’t.

In a recent Newsweek article titled “Research Moves Slowly. Rare Diseases Don’t—So Patients Aren’t Waiting,” rare disease advocates shared how systemic barriers delay progress, while patients face aggressive, life-altering conditions with limited treatment options. Desmoid tumors—classified by the World Health Organization as “intermediate (locally aggressive)” soft tissue tumors—fit this reality exactly. They don’t metastasize, but they can be debilitating, invasive, and unpredictable.

The Desmoid Tumor Research Foundation (DTRF) has long been at the forefront of disrupting this status quo. Founded in 2005, DTRF is the leading foundation in the world focused on desmoid tumors, advancing innovative research and uniting a global network of patients, clinicians, and scientists.

From launching the only virtual tumor board dedicated to desmoid tumor cases, to funding high-impact translational research, and advocating for drug development—DTRF’s efforts reflect the urgency of the disease and the resilience of its community.

As the rare disease space evolves, DTRF continues to build momentum. The Foundation invites patients, researchers, clinicians, and industry partners to join its mission and help close the gap between diagnosis and cure.

Read Full Article

Media Inquiries

Chaney Pope
Communications Manager, DTRF
chaney@DTRF.org

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Access the plain langauge summary of the DeFi study, published in The New England Journal of Medicine in March 2023.

In the DeFi study, researchers were studying if the drug called nirogacestat (Ogsiveo®) could slow disease progression and improve disease symptoms. The study included 142 adults with progressing desmoid tumors.

Read Full Plain Language Summary