Desmoid Tumor Awareness Month
What are desmoid tumors?
Desmoid tumors arise from a cell called a “fibroblast” or “myofibroblast” that has proliferated excessively. A fibroblast is a type of cell that is found throughout our body in connective and soft tissues. They are the structural support for our vital organs (e.g. lung, liver, blood vessels, heart, kidneys, skin, intestines, etc.) and are also involved in wound healing. Because of the prevalence of connective and soft tissues, desmoid tumors can occur at most sites of the body and are commonly found in the extremities, abdominal wall and intra-abdominally.
The desmoid tumor clinical course is unpredictable, and some desmoid tumors will spontaneously regress (~20%), others will remain stable (40-50%) and some will increase in size (30-40%). They can be locally invasive and have a high incidence of local recurrence, but they do not metastasize from one body part to another. For many patients, desmoid tumors are not life-threatening. However, their clinical course is unpredictable, and research is ongoing to determine what prognostic factors might help discern which desmoid tumors will need treatment and which will not. In some cases, desmoid tumors can become life-threatening when they compress important organs such as intestines, kidneys, lungs, blood vessels, nerves, etc.
Submit Your Story
Tell us about your journey with desmoid tumors and include a photo, or upload a 1 minute video. We may share your story on our public channels in September (and/or beyond) to help raise awareness!
Use Our DTRF Awareness Frame
Use Twibbon to add the Desmoid Tumor Awareness frame to your profile picture on Facebook, Instagram, and Twitter.
Our 2022 Desmoid Tumor Awareness Month Events
Mark your calendars for these upcoming live streams from DTRF’s Facebook account (facebook.com/desmoid):
Share Patient Journeys (In the Press!)
Share the journeys of patients eager to tell their stories to bring awareness to desmoid tumors.
How to Celebrate Desmoid Tumor Awareness Month:
As a Patient/Care Partner:
ON SOCIAL MEDIA
IN YOUR LOCAL COMMUNITY:
If you’re an organization or institution, use our toolkit here to promote DTAM!
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Watch Our Past Events
About Desmoid Tumor Awareness Month:
Desmoid Tumor Awareness Month was originally founded in 2016 by Desmoid Survivor, Angela F.. Seeking to raise awareness about this rare disease, Angela launched a Facebook page in September to publicly feature patients’ video stories and raise funds for desmoid tumor research. We are grateful to Angela, and all of the patients and caregivers who took the time and energy to participate and share their stories.
In September 2019, The Desmoid Tumor Research Foundation began building upon the work of our community by initiating a worldwide annual campaign to create awareness for desmoid tumors. Every September, DTRF and the patient and caregiver community will celebrate Desmoid Tumor Awareness Month. Wherever you are on the globe, we encourage you to participate and help us raise #DesmoidAwareness! To share your story, and learn about other ways to celebrate, educate, and raise funds for a cure this September, please visit DTRF.org/awareness.
September is the natural choice for Desmoid Tumor Awareness Month, as it’s the month DTRF hosts its largest annual event weekend, the DTRF’s 2022 Together We Will Virtual Weekend and RFA Virtual Challenge (modeled after the Foundation’s in-person event weekend including the DTRF Annual Patient Meeting and the DTRF Running for Answers 5K). This signature weekend, which has been taking place for more than a decade, is part of the fabric of the desmoid tumor patient and caregiver community. It provides essential education and joyous celebration of the progress we’ve made, while raising critical funds for desmoid tumor research.