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

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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.

REFERENCES:  Gounder, Mrinal. DTRF’s Diagnosis & Treatment Webpage. (2019, November) 

The Desmoid Tumor Working Group. “The Management of Desmoid Tumors: A joint global evidence-based consensus guideline approach for adult and pediatric patients.” (2019)  

LEARN MORE

 

#DesmoidFacts

“About Fibroblasts”

 

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

 

Use Our DTRF Awareness Frame

Use Twibbon to add the Desmoid Tumor Awareness frame to your profile picture on Facebook, Instagram, and Twitter. 

ADD OUR FRAME

 

Our 2022 Desmoid Tumor Awareness Month Events

Mark your calendars for these upcoming live streams from DTRF’s Facebook account (facebook.com/desmoid):

🔸 Sept. 7th @ 4PM ET:  “One Desmoid Tumor Patient’s Journey” with #DesmoidSurvivor Jackie Kucskar | WATCH

 

🔸Sept. 21st @ 4PM ET:  “5 Mental Health Tools for Desmoid Patients” with Ashley Williams, Licensed Clinical Social Worker (LCSW) and desmoid tumor patient | WATCH

 

🔸Sept. 28th @ 6PM ET:  “Getting the Most Out of Your Consultation and Treatment Plan” with Dr. Candace Haddox from Dana-Farber Cancer Institute.

 

Share Patient Journeys (In the Press!)

Share the journeys of patients eager to tell their stories to bring awareness to desmoid tumors. 

ARTICLE ABOUT CHRISTINA

ARTICLE ABOUT DANA

 

How to Celebrate Desmoid Tumor Awareness Month: 

As a Patient/Care Partner: 

  • 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! At the end of September, we’ll host the RFA Virtual Challenge Ceremony to close our Virtual Weekend.  LEARN MORE
  • Learn more about DTRF’s work since 2005, and share them with your loved ones. We’ll continue to advocate for patients and care parnters 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

 

 

Non-patients/Supporters: 

  • 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! At the end of September, 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

 

 

Partner Toolkit: 

If you’re an organization or institution, use our toolkit here to promote DTAM!

 

 

Other Information:

About The DTRF

Media Requests

Official Press Release (2019)

 

 

Watch Our Past Events

🔸Aired Sept. 9th, 2021:  “One Desmoid Tumor Patient’s Journey” with #DesmoidSurvivor Christina Kosyla

🔸 Aired Sept. 29th, 2021:  Facebook/ Instagram *LIVE* – “What’s in a name? ‘Cancer’ and Desmoid Tumors” with Dr. Raphael Pollock (The James Cancer Center, Ohio State University)  

🔸 Aired Sept. 26th, 2021:  A special RFA thank you to the community for celebrating Desmoid Tumor Awareness with us!

 

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 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. 

 

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