Celebrating 15 Years - Desmoid Tumor Research Foundation

Celebrating 15 Years

A message from Marlene Portnoy & Jeanne Whiting, DTRF Co-Founders



September of 2020 marks the 15th anniversary of DTRF’s founding!  Fifteen years is a major milestone. While half of rare diseases don’t have a foundation or a research support group (source: Global Genes), we are grateful for the continued support that enables us to still be here fighting for you.  As always, our mission continues to be funding research toward a cure, and advocating for desmoid tumor patients.




Over the years, we’ve accelerated our progress through COLLABORATION.

    • Collaboration with researchers around the globe and the experts on our Scientific and Medical Advisory Boards continues to expedite scientific progress. DTRF is the only foundation in the country dedicated to facilitating and funding research in this rare tumor. We have partnered with institutions like the NIH and FDA and have funded top cancer research institutions worldwide to move research forward.
    • Collaboration with physicians, scientists and patient advocacy groups from around the world led to the publication of the first-of-its-kind Global Consensus Paper on Desmoid Tumor Treatment, an invaluable resource for physicians and patients.
    • Collaboration is why we hold the Annual DTRF International Desmoid Tumor Research Workshop, a multi-disciplinary forum that helps inform and educate physicians and researchers on desmoid tumor research efforts, and helps prioritize the types of research and collaborations that we fund in succeeding years to move the science forward. 
    • Collaboration with medical institutions and pharmaceutical companies has allowed us to advocate for and support promising national and international clinical trials in desmoid tumors. Our hope is that two particular Phase 3 trials will lead to the first FDA-approved drug in this disease!
    • Through collaboration we hold a quarterly DTRF Virtual Tumor Board where experts from around the world meet virtually to hear case presentations, allowing physicians from any corner of the world to present their difficult desmoid tumor cases.

Over the years, we’ve accelerated progress in supporting and strengthening our patient and caregiver COMMUNITY.

    • Our website DTRF.org is a perpetual source of support and information for patients as they seek information about the disease, find specialists in the field, and get access to published research and information about treatment advances and clinical trials. 
    • To educate, empower and connect our worldwide community, we have organized the DTRF Annual Patient Meeting for the last thirteen years. 
    • In addition to our patient meetings, we have worked to provide more opportunities for patients to connect and network, such as the “Speed Desmoidian-ing” event and the recent virtual “Timely Tumor Talks,” with plans to do more of these events moving forward.
    • We launched our signature annual fundraiser “Running for Answers” (RFA) and the community has bonded and rallied around this effort, keeping it going strong for more than a decade.
    • Beyond RFA, we have supported fundraising events organized by patients, such as the Golf Classic, Lap4Life, Swing for a Cure, the Desmoid Dash, fundraisers by the Desmoid Tumour Foundation of Canada and many others. These grassroots fundraisers and individual donations are our lifeblood for funding research.

Over the years, we’ve accelerated research through PARTNERSHIPS.

    • Our partnership with the National Institutes of Health, pharmaceutical companies, the FDA and organizations that conduct clinical trials has facilitated important large national and international desmoid tumor clinical trials never seen before in this rare disease.
    • Our supportive partnership with patients helped us create the first Patient-Reported Outcomes (PRO) tool that is being validated in ongoing clinical trials, allowing the patient voice and experience to be considered in FDA drug approval.
    • Our exciting partnership with the Rare Cancer Research Foundation and the Broad Institute of MIT & Harvard involves both funding the creation of a desmoid tumor dependency map that links the genetic features of a tumor with its specific vulnerabilities, and the creation of desmoid tumor laboratory models for use by researchers worldwide. 
    • In partnership with the FDA and the National Organization for Rare Disorders (NORD), we launched the DTRF Patient Registry to study the natural history of desmoid tumors, creating an important database that helps researchers and pharmaceutical companies in developing clinical trials and other studies. 
    • Our partnership with Sarcoma Alliance for Research through Collaboration (SARC) has integrated us into an international coalition of sarcoma advocacy groups to further our common interests worldwide. 
    • Our partnership with multiple desmoid tumor patient advocacy groups around the globe fosters international cooperation to support patients and advocate for better treatments.  

While 2020 has brought challenges due to the pandemic, we are meeting these challenges and looking forward with strength and hope. DTRF is grateful every day for our passionate community that has rallied to support us, for our scientific and medical advisors and researchers, and for our generous donors who have stayed with us for the long haul and the new ones who join in the cause every year!

Together, we will find a cure!    

~Marlene and Jeanne, DTRF Co-Founders