Submit Your Story for Desmoid Tumor Awareness Month

September is Desmoid Tumor Awareness Month!

Will you help us raise #DesmoidAwareness by submitting your story?

Following the guidelines for each field below, tell us about your journey as a patient or caregiver with desmoid tumors. Either write your story and upload photos, or upload a 1 minute video for us. We may share your story on our public channels in September (and/or beyond) to help raise awareness!

Submit your story below.

Name*
First Last
Age*
Email*
State or Country*
Your Story: Choose 1 of the following questions. Respond in the field below, using less than 1500 characters.
1. Who or what inspires you most to keep fighting for a cure, and why?
2. How has your desmoid tumor journey made you stronger?
3. How does living with desmoid tumors impact your life? Future?
4. What or has there been a dramatic turning point along your desmoid journey? Describe it.
5. If you could have any superpower, what would it be? How would you use it to educate and increase awareness of desmoid tumors for those who are unfamiliar?
6. DTRF is working hard to transform treatment and care and increase the quality of life for patients with desmoid tumors. In three words, describe why an individual should donate to DTRF.
Photos (Please read important note below before uploading!)
If you are the patient, please submit up to 6 photos of yourself, including *at least one photo of you alone (pets are okay)*. If you are the care partner of a minor patient, please submit up to 6 photos of you and the patient, along with *at least one photo of the patient alone (pets are okay)*. Additional photos can include family, friends, partners, etc, who are 18+. Please submit clear, bright, un-cropped photos (overly cropped or dark or blurry photos cannot be used).
Drop files here or

Max. file size: 128 MB, Max. files: 10.
OR
One- Minute Video: If you would like to share your story via video, please respond to *ONE* of the following prompt questions in ONE MINUTE and upload it here.
Max. file size: 256 MB.
* PLEASE KEEP YOUR VIDEO TO 1 MINUTE!* (The maximum file size you can upload is 256 megabytes.)
*Please remember to shoot your video in a QUIET and WELL LIT space. Having someone else record you vs. doing it yourself may also improve quality.*
1. Who or what inspires you most to keep fighting for a cure, and why?
2. Has there been a dramatic turning point along your desmoid journey? Describe it.
3. What gives you the most hope in your fight against desmoid tumors?
4. What do you need to share with those not familiar with desmoid tumors?
5. For DTRF fundraisers: Why do you fundraise for The DTRF?
Don't worry! I uploaded...*
- At least *6* photos per the guidelines above
- A one-minute video per the guidelines above
Talking to the Media (For U.S. Patients)*
Are you interested in speaking to the media about your personal journey?
- Yes
- No
DTRF Release and Consent*
Making a selection below constitutes your signature and consent:
- PATIENT 18 OR OLDER: I, the person in this story/photo/video, consent and grant to DTRF the right and permission to use and publish statements made by me and my image in any and all media formats for the purposes authorized here: staff/volunteer/board member education and internal foundation meetings; DTRF website and social media channels; discussions with advocacy partners; pharmaceutical companies and the FDA; presentations or brochures; media and press releases, and other similar purposes to publicize or present DTRF’s programs in other forums. I understand that my participation is voluntary and I release and discharge DTRF from any and all liability arising out of or connected to their exercise of these publicity rights for the authorized purpose(s) described above. There is no time limit on the validity of this release nor is there any geographic limitation as to where these publicity rights may be exercised.
- PARENT/GUARDIAN OF DESMOID PATIENT: I, the parent/guardian of the minor child in this story/photo/video, consent and grant to DTRF the right and permission to use and publish statements made by me, as well as my image and the child’s image, in any and all media formats for the purposes authorized here: staff/volunteer/board member education and internal foundation meetings; DTRF website and social media channels; discussions with advocacy partners; pharmaceutical companies and the FDA; presentations or brochures; media and press releases, and other similar purposes to publicize or present DTRF’s programs in other forums. I understand that my participation is voluntary and I release and discharge DTRF from any and all liability arising out of or connected to their exercise of these publicity rights for the authorized purpose(s) described above. There is no time limit on the validity of this release nor is there any geographic limitation as to where these publicity rights may be exercised.
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Email
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Thank you for contributing your story! You will receive an email confirming its receipt.

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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.