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The Desmoid Tumor Research Foundation

DTRF Update: Welcoming Incoming Executive Director

Education

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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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Thank you to our global desmoid tumor community of patients, caregivers, researchers, and medical professionals who traveled to Chicago and participated in the DTRF Together We Will Weekend. It was wonderful to connect with everyone in person in a brand new city! We are grateful to our Presenting Event Sponsor, SpringWorks Therapeutics, for making the Weekend possible.

Together we advanced research, connected with each other, empowered ourselves, and fundraised for a cure, while celebrating our community and Desmoid Tumor Awareness Month!

  • September 12, 2025 – DTRF International Desmoid Tumor Research Workshop: Dedicated clinicians and researchers from around the world attended the Int’l Desmoid Tumor Research Workshop, presenting the latest desmoid tumor science and research advances. We’re honored to host this essential collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities. Recordings of the Workshop’s presentations (including live Q&A) are now available. Check out this year’s photo gallery as well.
  • September 13, 2025 – DTRF Annual Patient Meeting: At the heart of our annual Weekend, patients, caregivers, clinicians, and researchers gathered to connect, collaborate and learn. Recordings of the educational presentations (including live Q&A) are available on our Patient Meeting Presentations page. Check out this year’s photo gallery.

The work continues to find better treatments and, one day, a cure for each and every desmoid tumor patient. Once again, on behalf of the DTRF team, THANK YOU!

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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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September is here, and so is Desmoid Tumor Awareness Month (DTAM)—a time to share stories, raise awareness, and come together as a community.

We’re excited to announce the winner of our first-ever DTAM Logo Contest, Cassandra Hernandez! Her artisitic design was chosen because it beautifully captures both the reality of desmoid tumors and the resilience of those who live with them. Scroll down to learn about her story and the meaning behind her logo.

Thank you to everyone who submitted designs—you’ve reminded us how special and talented our community truly is!⁠

The Story Behind the Logo

Diagnosed with a desmoid tumor in her right abdominal wall just over two years ago, Cassandra recalls the fear and uncertainty after her diagnosis:

In 2023, I was diagnosed with a desmoid tumor in my right abdominal wall. Weeks after an emergency gallbladder surgery, I realized I wasn’t healing the way I should and felt a knot near my ribs. In the beginning, there was so much uncertainty and confusion about what was going on and what I even had. Doctors initially thought it was a large hematoma, but it grew substantially in a short period and severe pain set in, so I kept advocating for more answers. Eventually, I found a wonderful team of doctors at City of Hope in Zion, IL, who ultimately diagnosed me with a desmoid tumor.

Cassandra’s logo design was inspired by the butterfly bush—a plant that is beautiful above ground and locally aggressive underneath the surface.

The butterfly bush reminded me of desmoid tumors. It grows deep and invades nearby spaces, but its beauty above ground symbolizes hope and resilience of the desmoid community.

This contest means a lot to me because it’s about taking back my power and finding pride in the challenges I’ve faced. My wish is that every patient and caregiver finds a part of themselves that continues to bloom and show their beauty, even in the hardest times.”

We are honored to feature her meaningful design in a variety ways in our DTAM campaign this year!

How YOU Can Get Involved This September:

DTAM is all about taking action! Here are five ways you can take part and help raise awareness this month:

  1. Follow us on Facebook, Instagram, LinkedIn & X to share our DTAM social media content and format a Twibbonize frame to your profile picture.
  2. Save-the-date for our Facebook Live Event with desmoid tumor patient, Tiffany Braswell on Thursday, September 25th at 6PM ET.
  3. Keep DTAM going by registering the educational webinar, “Pregnancy and Desmoid Tumors” on Friday, October 10th at 12PM ET. Submit your questions to our panelists ahead of time.
  4. Start a virtual fundraiser and share it with your community by launching your own RFA Virtual fundraising page.
  5. Give what you can, when you can by making a donation to support our mission. We can’t do our work with YOU.

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Become a DTRF Ambassador! DTRF Ambassadors are volunteers who extend the ability of the Desmoid Tumor Research Foundation (DTRF) to serve patients and caregivers across the U.S., and help to strengthen and support the desmoid tumor patient population in their local communities.

NOTE:  After a program agreement, ambassadors will begin the onboarding process with a DTRF team member. The following list of responsibilities may change based on the needs of the DTRF community.

Responsibilities can include:

Patient and Caregiver Support
  • Using your experience with desmoid tumors to provide empathy and compassion for others on their journey
  • Connect patients and caregivers with local support organizations, healthcare professionals, and resources* that can assist in their desmoid tumor journey

*DTRF does not directly endorse, support, or recommend any products or services.

Educational Materials and Resources
  • Become educated about the programs and resources the DTRF makes available to the desmoid tumor community 
  • Engage virtually (or in-person) with patients by sharing DTRF resources, services and educational materials 
  • Gather information on local helpful patient resources to contribute web content to the DTRF knowledgebase
Medical Outreach
  • Assist DTRF staff in promoting and distributing educational materials to doctors and medical centers
  • Identify local doctors treating desmoid tumors for possible inclusion in the DTRF’s Doctor Directory (internal document)
  • Encourage local doctors and medical centers to refer desmoid tumor patients to the DTRF for information and support

Optional activities: 

  • Host local or regional informal meet-ups for patients and caregivers
  • Work together with DTRF staff to plan regional community conferences
  • Identify potential funders or major donors who may be interested in supporting the DTRF’s mission

Expectations

  • Take initiative to become educated about the programs and resources the DTRF makes available to the desmoid tumor community.
  • Maintain regular contact with a designated DTRF staff member, and keep them informed of activities performed on behalf of DTRF.
  • Respect the privacy of patients and caregivers; do not share patient identities or health information with anyone other than your designated DTRF staff contact.
  • Clearly represent your role as a volunteer for the DTRF when communicating in your capacity as an Ambassador.
  • Never attempt to give medical advice or opinions on how a patient should be treated; instead, share facts or educational resources and allow them to make their own decisions.
  • Act in the best interest of the DTRF by operating with integrity and high ethical standards, using your best judgement to avoid any activities that could create risk or reputational harm to the Foundation.
  • Proactively disclose to DTRF staff any potential personal or professional conflicts of interest. 
  • Maintain confidentiality of non-public information obtained from the DTRF.
  • Willingly accept training, coaching, and feedback from DTRF staff.

Support

The DTRF staff will support and direct the work of Ambassadors in the following ways:

  • Work with Ambassadors to identify activities based on the Foundation’s goals as well as the needs and opportunities of the Ambassador’s local community
  • Provide DTRF materials and collateral as needed
  • Provide training and oversight appropriate to the Ambassador’s activities
  • Provide introductions to patients, families, and medical professionals, as appropriate
  • Handle logistics of DTRF professional meetings, as needed

To learn more or to express interest in joining the program, please contact info@dtrf.org. We look forward to hearing from you!

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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