Desmoid Tumor Awareness Month - Desmoid Tumor Research Foundation
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Desmoid Tumor Awareness Month

What are desmoid tumors?

Desmoid tumors (also known as aggressive fibromatosis) are rare, invasive, soft tissue tumors that affect 5-6 per every 1 million people. 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. LEARN MORE

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How to Celebrate Desmoid Tumor Awareness Month: 

As a Patient/Caregiver: 

  • 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! 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 27th, we’ll host a the RFA Virtual Challenge Ceremony to close our Virtual Weekend. 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. TIPS
  • Change Your Profile Picture! Either download the DTAM image (under Partner Toolkit below) and replace your current photo, or use our official DTAM Twibbon frame to add to your current photo on Facebook and/or Twitter. 
  • 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 this rare, life-altering disease! FACEBOOK | TWITTER 

     

      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! 
  • Secure a Government Proclamation Where You Live! Did you know that you can request the town, city or state you live in to issue an official proclamation for Desmoid Tumor Awareness Month? Go to your local government website and search the site for “proclamations.” PHILADELPHIA’S PROCLAMATION
  • 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

 

 

Non-patients/Allies: 

  • 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 a 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 
  • Change Your Profile Picture! Either download the DTAM image (under Partner Toolkit below) and replace your current photo, or use our official DTAM Twibbon frame to add to your current photo on Facebook and/or Twitter. 

 

 

Partner Toolkit: 

Want to help us raise awareness during Desmoid Tumor Awareness Month? 

Download our campaign files/visit the links below: 

 

 

Other Information:

About The DTRF

Media Requests

Official Press Release

 

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.

 

 

Why September?

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 2020 Together We Will Virtual Weekend and RFA Virtual Challenge (modeled after the Foundations’ 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 provide essential education and joyous celebration of the progress we’ve made, while raising critical funds for desmoid tumor research. 

 

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