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The Desmoid Tumor Research Foundation

DTRF Update: Welcoming Incoming Executive Director

News

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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

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We need everyone’s help to protect critical funding for desmoid tumor research. This call-to-action is for anyone reading this message, whether you are a patient, clinician, or caregiver. 

A few weeks ago, the National Institutes of Health (NIH) announced a major change: they plan to reduce the rate for “indirect costs” to 15% for all new and existing NIH contract awards. Indirect costs are essential to supporting the infrastructure that enables scientific research.

The decision has already been met with strong opposition, and multiple states have filed lawsuits challenging this decision. In addition, we have now heard from a number of the DTRF advisory board members asking for our help in mobilizing the desmoid tumor community. If this policy change is enacted, it can directly affect researchers studying desmoid tumors and it can significantly hinder the progress of our research efforts. 

Please urge your Senators and members of Congress to oppose the recent Executive Order to cut NIH indirect costs. 

The NIH is the world’s largest funder of biomedical research. If enacted, the Executive Order would cut tens of millions of dollars in essential support services to scientists and clinicians who are driving scientific discovery.

Congress needs to hear from you TODAY on how cuts to NIH research impact you.

WHAT YOU CAN DO:

  1. Find contact information for your Members of Congress
  2. Call them directly.
  3. Use the script below to make your request:

“Hello, my name is [YOUR NAME], and I am a rare disease advocate from [YOUR CITY, STATE]. I am deeply concerned about the decision to cut NIH funding, which will severely impact rare disease research and would impact my [SELF, CHILD, FAMILY MEMBER, FRIEND, ETC]. 

These cuts will prevent the research that could lead to treatments and a cure for Americans living with desmoid tumors. I urge [SENATOR/REPRESENTATIVE NAME] to support full NIH funding and reverse these harmful cuts. Thank you for your time and commitment to medical research.“

You can also download the 5 Calls app to make this call-to-action even easier. Follow the steps on the app to connect with your Senators and members of Congress.

Every call makes a difference! Please share this message with your networks and help us ensure that desmoid tumor research continues to receive the support it needs.

In the meantime, we will remain committed to our work of accelerating desmoid tumor research and supporting the patient community.

Thank you for taking action today!

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Dear DTRF Desmoid Tumor Patient Registry Participants,

Thank you for your ongoing contributions to the DTRF Patient Registry. We are excited to tell you that NORD®, the host of the registry, has upgraded to a new version of the IAMRARE® platform. We have been working with NORD to migrate the DTRF Patient Registry to the new platform, and this process is nearing completion. The data you have already contributed to the Registry will be transferred to this new platform automatically. Once the migration process is complete, you will receive an email that will describe the steps you need to take to access the new platform. 

To complete the migration, we will need to pause access to our registry beginning on February 10th, 2025. You will not be able to access the platform or complete surveys during this time.

As part of migration, we have updated our study documents including the Informed Consent document you previously signed. These are the changes that we wish to make you aware of:

  1. We are now more specific about different levels of data use requests that the DTRF Patient Registry may receive from researchers. The levels are based on how much and how detailed the information needs to be for them to answer their research question(s). We also provide an explanation for the process involved in determining whether the requests should be approved and what level of data should be provided. The details of this are explained in the section called How We Use the Data.
  2. We indicate in the section called If You Live Outside the United States that the servers that store the data are now located in Canada.
  3. During registration for the platform, we are collecting information to be able to create a Global Unique Identifier for each participant. The goal of this identifier is to allow the combination of different data sets without having to share your name or other personal information.
  4. The original consent that you signed stated that if you were to choose to withdraw from the study, then the policy was that the participant’s information would not be used for new research. This has been changed in the new consent and is included in the section on Voluntary Participation, Withdrawal and Alternative to Participating. The main difference is that you now have a choice: 1) you withdraw from the study and you will not provide any new information, but the information already included can be used for ongoing and new research, or 2) you withdraw from the study and request that your information is removed from the platform and not used in new research. If you wish to withdraw your consent, please reach out to us and inform us of which option you are choosing.

We have attached the new consent form to this letter for you to review. If you would like to speak with someone from our team to answer any questions, please let us know at registry@dtrf.org. If you wish to reconsider your willingness to take part in the study, please let us know at registry@dtrf.org.

Please feel free to reach out with any study-related questions or to discuss any concerns. 

Sincerely,

The Desmoid Tumor Research Foundation Team

DTRF Patient Registry Consent Forms:
Adult Consent for Study Participants over age 18

Consent for a person with a Legally Authorized Representative (LAR) who is unable to consent for him or herself

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In recent months, the DTRF learned from patients that the 50mg tablet of Ogsiveo® (nirogacestat) will no longer be available after 2024. The DTRF contacted SpringWorks Therapeutics to advocate for patients who are currently receiving the 50mg tablet.

Last week, the SpringWorks Therapeutics team confirmed that the 50mg tablet of Ogsiveo® will, in fact, no longer be available as of January 1, 2025.  

New blister packs are available for the FDA-approved 100mg and 150mg doses of Ogsiveo®. Click here to read the statement SpringWorks provided to the DTRF.

The DTRF advises that patients talk to their physician, pharmacist, or other trusted medical team member with any questions. Medical professionals are encouraged to reach out to the SpringWorks Medical Information team on behalf of their patients to receive answers to questions regarding this change.

Follow the steps below with the help of your medical team to receive the most timely and accurate Ogsiveo® information: 

  1. Bring your Ogsiveo® dosage questions or concerns directly to a trusted member of your medical team (including your physicians and pharmacists).
  2. Ask your trusted medical professional to contact a SpringWorks Medical Information team member directly at 1-888-400-7989 or medinfo@springworkstx.com.
  3. Request that your medical professional ask specific, direct questions when discussing Ogsiveo® so that clear recommendations can be relayed back to their patient(s).

Please note: Only medical professionals, including physicians, pharmacists, or other medical team members, are permitted to discuss Ogsiveo® dosage questions or concerns with the SpringWorks Medical Information team.  

If you are a desmoid tumor patient needing educational, emotional, or financial support and resources while taking Ogsiveo®, you can connect directly with SpringWorks CareConnections™. 

If you’ve been impacted by the 50mg tablet no longer being available, please contact the DTRF at info@dtrf.org to share your experience and help us continue advocating for desmoid tumor patients.