Desmoid Tumor Awareness Month
What are desmoid tumors?
Desmoid tumors (also known as aggressive fibromatosis) are rare, invasive, soft tissue tumors with 5-6 new cases per every 1 million people each year. However, due to frequent misdiagnosis, the number of cases may be higher. Desmoid tumors arise in the connective tissues of the body and, although they do not metastasize, they can be locally aggressive and severely damage surrounding tissues and vital structures as they grow.
These tumors may occur anywhere in the body (abdominal, intra-abdominal, and extra-abdominal locations) and approximately 5-10 % arise in the context of a rare genetic condition known as familial adenomatous polyposis (FAP).
Possible treatments include active surveillance (“watch and wait”), systemic treatments (chemotherapies and other targeted medical therapies), surgery (though recurrence rates are high), radiotherapy and more. At this time, there is no FDA-approved treatment for desmoid tumors, but recent progress has been made in standardizing the management of this life-altering rare disease.
REFERENCES: Gounder, Mrinal. DTRF’s Diagnosis & Treatment Webpage. (2019, November) https://dtrf.org/diagnosis-and-treatment/
The Desmoid Tumor Working Group. “The Management of Desmoid Tumors: A joint global evidence-based consensus guideline approach for adult and pediatric patients.” (2019) dtrf.org/consensus-paper
Change Your Facebook Profile Photo
Add the official Desmoid Tumor Awareness Facebook frame! Make sure your loved ones know that it’s Desmoid Tumor Awareness Month by changing your Facebook profile photo.
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!
Watch Our Events
🔸Aired Sept. 9th: “One Desmoid Tumor Patient’s Journey” with #DesmoidSurvivor Christina Kosyla
🔸 Aired Sept. 26th: A special RFA thank you to the community for celebrating Desmoid Tumor Awareness with us!
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/Caregiver:
- Attend our Virtual Weekend! DTRF’s Together We Will Virtual Weekend will take place from September 24th- 26th. There will be opportunities to learn, connect, and fund a cure. Since it’s virtual, anyone can participate from anywhere… join us! REGISTER HERE
- 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! SUBMIT YOUR STORY
- Become an RFA Virtual Challenger! When you register for DTRF’s Together We Will Virtual Weekend, you’ll automatically be signed up as an RFA Virtual Challenger. Set a fundraising goal, create a challenge and you’re off! On September 26th, we’ll host the RFA Virtual Challenge Ceremony to close our Virtual Weekend. LEARN MORE
- Learn more about our work! September 2020 marked DTRF’s 15th year of patient advocacy. We’ve been working hard to provide patients with answers, to foster research collaborations, and to find a cure for this rare disease. Our successes wouldn’t be possible without your support. Learn more about our achievements since 2005, and share them with your loved ones. We’ll continue to advocate for patients and caregivers like you. LEARN MORE
- Talk About Your Story! Whether or not you’ve shared your desmoid tumor story with us, be sure to talk to your friends, family and colleagues about your experience. Sharing your journey helps raise awareness and encourages donations for desmoid tumor research. TIPS
- Make a Donation! The research that The Desmoid Tumor Research Foundation funds has made significant strides in understanding desmoid tumors and has led to the development of better treatments for patients. Help accelerate our mission to find a cure for this disease! DONATE
ON SOCIAL MEDIA
- Start a Facebook Fundraiser! It’s easier than ever to raise funds for The DTRF by creating a Facebook fundraiser. START FUNDRAISING
- Share Patient Stories! Throughout the month of September, DTRF will be sharing stories of desmoid tumor patients and caregivers on Facebook and Twitter. Please consider sharing these stories with your networks to help us raise awareness and funds for this rare, life-altering disease! FACEBOOK | TWITTER | INSTAGRAM
IN YOUR LOCAL COMMUNITY:
- Host a Local Fundraising Event! Our patient and caregiver community has hosted creative, local fundraising events all around the country and world. Read about some of their Past Events to inspire you!
- 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. TIPS
- Become an RFA Virtual Challenger! Sign up for the RFA Virtual Challenge and help fund a cure for desmoid tumors. Set a fundraising goal, create a challenge and you’re off! On September 27th, we’ll host the RFA Virtual Challenge Ceremony to close our Virtual Weekend. LEARN MORE
- Make a Donation! The research that The Desmoid Tumor Research Foundation funds has made significant strides in understanding desmoid tumors and leading to the development of better treatments for patients. Help accelerate our mission to find a cure for this disease! DONATE
- Share Patient Stories! Throughout the month of September, The DTRF will be sharing stories of desmoid tumor patients and caregivers on Facebook and Twitter. Please consider sharing these stories with your networks to help us raise awareness and funds for research! FACEBOOK | TWITTER | INSTAGRAM
If you’re an organization or institution, use our toolkit here to promote DTAM!
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 2021 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.