Desmoid Tumor Awareness Month is an annual, worldwide DTRF campaign that builds upon the work of our community to create awareness for desmoid tumors.
Every September, the DTRF and the global patient and caregiver community share stories and information, and rally support to advance desmoid tumor research. Wherever you are, we encourage you to participate and help us raise #DesmoidAwareness!
We would like to thank Desmoid Survivor, Angela F. for founding the first Desmoid Tumor Awareness Month. In September of 2016, Angela launched a Facebook page to publicly feature patients’ video stories and raise funds for desmoid tumor research and ignited a spark that has grown into a global celebration. We are grateful to Angela, and all of the patients and caregivers who take the time and energy to participate and share their stories.
2024 DTAM Virtual Events
Register for the Sept. 5th Zoom Webinar
What are Desmoid Tumors?
Desmoid tumors (also known as aggressive fibromatosis, desmoid fibromatosis, and desmoid-type fibromatosis) are rare, locally invasive, soft tissue tumors that form in the connective tissues of the body. They can occur anywhere in the body. Common sites include the abdominal muscles, inside the abdomen, the head and neck area, trunk, breast, and the extremities.
Desmoid tumors do not have the ability to metastasize (i.e., spread through the blood or lymph system to other distant locations or organs), but in some rare cases, an individual can have more than one desmoid tumor (also called “multifocal”).1
Although desmoid tumors do not metastasize, they can be locally aggressive and severely damage surrounding tissues and vital structures as they grow. They also have a high rate of regrowth or “recurrence” after surgery, and should be monitored long-term in most cases.
Ways to Celebrate Desmoid Tumor Awareness Month
As Patients and Caregivers
As a desmoid tumor patient or caregiver, you are in the unique position of experiencing this diagnosis first-hand. Whether you’re speaking one-on-one or sharing publicly, you’re connecting people to this disease who may be motivated to directly support our community’s needs.
Tell us about your journey with desmoid tumors so that we can amplify your story. We may share your story on our public channels in September (and/or beyond) to help raise awareness!
Attend the annual DTRF Together We Will Weekend in Houston. This signature event provides essential education and joyous celebration of the progress we’ve made, while providing opportunities for our entire community to interact with and inspire each other. The weekend culminates with our signature fundraising event, the RFA Walk. Walk or roll (wheelchairs welcome!) together in at the Houston Zoo, to raise awareness and funds for desmoid tumor research.
As Desmoid Community Members & Supporters
Add a profile photo frame to your social media accounts this year by using our Twibbonize campaign.
Share DTRF Social Media Content. Throughout the month of September, the DTRF uses our social media channels to amplify patient and caregiver voices and share desmoid tumor facts. Please consider sharing this content with your networks to help us raise awareness and funds for this rare, life-altering disease!
Share Patient Stories. One of the most impactful ways to raise awareness and illustrate the need for funding for desmoid tumor research is through sharing desmoid tumor patient and caregiver stories. Their unique experiences highlight the wide variance in desmoid tumor presentation, treatment and prognosis, and demonstrate just how complex this disease is.
View Patient & Caregiver Stories
Write a Letter to the Editor. Write about your desmoid experience and Desmoid Tumor Awareness Month in a letter to the editor of your local paper. This is a great way to get an issue you care about in front of a lot of people.
Join us for RFA 5K & Fun Run! Our signature annual fundraiser is a 5K and fun run held on the fourth Sunday of September, in Philadelphia’s Fairmount Park. If you can’t join us in Philadelphia, fundraise virtually! At the end of September, we’ll host a virtual event to celebrate your fundraising efforts!.
Start a Facebook Fundraiser. It’s easier than ever to raise funds for the DTRF by creating a Facebook fundraiser.
Start Your Facebook Fundraiser
Host a Local Fundraising Event. Our patient and caregiver community has hosted creative, local fundraising events all around the country and world.
Make a Donation – DTRF-funded research has made significant strides in understanding desmoid tumors and led to the development of better treatments for patients. Help accelerate our mission to find a cure for this disease!
Corporate Donations – The DTRF is honored to be working with some of the most passionate corporations in the country. Corporate donation programs help us pursue our mission both by direct Corporate Giving and indirectly by engaging their employees. Additionally, matching programs and corporate fundraising events that benefit the DTRF provide other opportunities for businesses to support our mission.
Event Sponsorship – Partnering with the DTRF as an event sponsor provides an opportunity to advance our mutual priorities. Join us in our mission to support our patient community and fund research.
Watch Past Desmoid Tumor Awareness Month Events
Table of Contents
Learn About Past Desmoid Tumor Awareness Months
September 30, 2023
Desmoid Tumor Awareness Month 2023 Comes To A Close
Read More about Desmoid Tumor Awareness Month 2023 Comes To A Close
September 30, 2022
Desmoid Tumor Awareness Month 2022 Comes To A Close
Read More about Desmoid Tumor Awareness Month 2022 Comes To A Close
September 30, 2021
Desmoid Tumor Awareness Month 2021 Comes To A Close
Read More about Desmoid Tumor Awareness Month 2021 Comes To A Close
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Patient & Caregiver Stories
Our Strategy & Impact
The DTRF Newsletter
Join the DTRF community! We carefully curate our bi-weekly newsletter to highlight upcoming events, the latest desmoid tumor progress, research updates, and patient care advances!
