The Desmoid Tumor Research Foundation (DTRF)

📣 September is #DesmoidTumorAwarenessMonth! Celebrate by sharing Courtney-Sue's story to help raise #DesmoidAwareness. Visit DTRF.org/awareness for more ways to celebrate, educate, and raise funds this September. The desmoid tumor patient experience is vast and varied, but members of our community have one thing in common: they are not fighting this rare disease alone. The DTRF is dedicated to supporting patients and funding critical research, leading to improved treatments and, eventually, a cure for every desmoid tumor patient. The DTRF, a 501(c)(3) organization, is the only foundation in the U.S. dedicated to funding research for desmoid tumors. Our progress is accelerating! Learn more and help us keep the momentum going with a donation: https://bit.ly/givetodtrf ✨ Don't forget to register for the annual "Together We Will" Weekend from Sept. 20-21 here: https://bit.ly/2024tww. In honor of DTAM, the promo code TWW10 for 10% off has been extended until Sept. 17th! #DTAM #desmoidtumorawareness #togetherwewillweekend2024 #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #desmoidresearch #familialadenomatouspolyposis #OrphanDisease #raredisease

SEPTEMBER is Desmoid Tumor Awareness Month! Watch Lynne Hernandez, DTRF Executive Director, kick off this annual global effort to raise #DesmoidAwareness. 🔸 Visit DTRF.org/awareness to see our event schedule and learn ALL the ways patients, caregivers, and supporters can help raise #DesmoidAwareness this month, and beyond! 🔸 Don't forget to register TODAY for this week's Webinar on Thursday, 9/5 @ 4-5 PM ET, featuring Dr. Dale Shepard. During it, Dr. Shepard will explain how impactful the testing of biomarkers is in the diagnosis and treatment of desmoid tumors. He will also touch on genetic testing in relation to CTNNB1 mutations. 🔗 Register here: https://lnkd.in/ebhSbsQv 🔸 Save-the-dates for our upcoming FB Lives with desmoid tumor patient, Megan Barrell on 9/11 @ 3-4 PM ET and Amanda MacKinnon, caregiver of a desmoid tumor patient on 9/25 @ 3-4 PM ET. Thank you to our DTAM Virtual Events sponsor, Recursion, for supporting this special awareness month! #DTAM #desmoidtumorawareness #togetherwewillweekend2024 #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #familialadenomatouspolyposis #OrphanDisease #raredisease #RFA24

✨ Meet some of our 2024 Desmoid Tumor Int'l Research Workshop Presenters! Designed for researchers and medical professionals, the annual DTRF Int'l Desmoid Tumor Research Workshop on Friday, Sept. 20, is a critically important, collaborative event that brings together some of the brightest minds in the field of desmoid tumors from various disciplines. Take a look at the Int'l Research Workshop's list of distinguished presenters: https://lnkd.in/ehSd9i6x 🔗 Register for the Int'l Desmoid Tumor Research Workshop in person or VIRTUALLY: https://lnkd.in/ehSd9i6x 🔗 Hotel deadline for the DTRF room block is 9/3! Book your hotel room ASAP: https://lnkd.in/eDsY-nD4 #Desmoid #DesmoidTumors #DesmoidTumor #aggressivefibromatosis #DTRF #DesmoidTumorResearchFoundation #Desmoidian #desmoidresearch #raredisease #sarcoma #sarcomaresearch #sarcomaawareness #oncology #research #hope

💻 Register today for the upcoming Desmoid Tumor Awareness Month (DTAM) webinar entitled, “Biomarkers: Predicting tumor behavior and choosing therapies", hosted by the DTRF with special guest Dale R. Shepard, MD, PhD, Medical Oncologist from the Cleveland Clinic. He sees nearly 200 sarcoma consults annually with patients from across the country including patients with desmoid tumors. This one-hour webinar will be held on September 5, 2024, from 4-5PM ET. During it, Dr. Shepard will explain how impactful the testing of biomarkers is in the diagnosis and treatment of desmoid tumors. He will also touch on genetic testing in relation to CTNNB1 mutations. Thank you to our DTAM Virtual Events sponsor, Recursion, for supporting this special awareness month. Learn more about this webinar and register here: https://lnkd.in/e-389dc5 #DTAM #desmoidtumorawareness #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease

🎟️ Only more 7 days to book your stay in the DTRF room block for the "Together We Will" Weekend! Register for the DTRF "Together We Will" Weekend at https://bit.ly/2024tww. Use code TWW10 for 10% off by 8/31. All conference events will be held at the Houston Marriott Medical Center/Museum District from Sept. 20-21. This beautiful hotel is close to Hermann Park and the Houston Zoo for the RFA Walk on Sunday, Sept. 22nd. 🔗 A DTRF room block has been reserved at the hotel for $169 per night. Click here to reserve your room by 9/3: https://bit.ly/3wb7cm6. Please use the group code TWWTWWR (not a typo) to request the “DTRF Together We Will Weekend” room block. 🎟️ Remember to register separately for the RFA Walk here: https://bit.ly/2024RFAwalk. You don't to miss out on all the fun throughout this annual weekend! #togetherwewillweekend2024 #togetherwewillweekend #RFA24 #DTRF #Desmoidian #RFA #RFAwalkthewalk #crazysocks #desmoidtumorresearchfoundation #desmoidtumor #desmoidawareness #fundacure #fundraising #donate #desmoidresearch #RFA24

💜 Get ready for Desmoid Tumor Awareness Month with our Twibbonize campaign! Follow the steps below to add a #desmoidtumor awareness frame to your social media profile pictures. Here's how to create one: 1) Go to our Twibbonize campaign: https://lnkd.in/edvsnCiC 2) Upload your favorite profile picture. 3) Twibbonize will format the DTAM frame for you, and you can make any adjustments needed. 4) Download the image to your device and then upload it to any of your social media profiles to start supporting this special month! 🦄 That's all there is to it! Share this post with your social media channels too! Remember, Desmoid Tumor Awareness Month is just days away in September — this is such an easy way to spread awareness all month long! #DTAM #desmoidtumorawareness #desmoidtumorawarenessmonth #togetherwewillweekend2024 #DTRF #Desmoidian #desmoidtumorresearchfoundation #fundacure #fundraising #donate #desmoidresearch #RFA24

⭐ So exciting! Less than a month until the DTRF "Together We Will" Weekend registration and RFA Walk! Join us this fall in Houston to connect with fellow desmoid tumor patients, caregivers, clinicians, and researchers. 1️⃣ Register for the "Together We Will" Weekend from Sept. 20-21 here: https://bit.ly/2024tww. The registration page details the hotel block available until 9/3 and the Weekend agenda. Use promo code TWW10 for 10% off by 8/31. 2️⃣ Register separately for the RFA Walk on Sept. 22 here: https://bit.ly/2024RFAwalk. Use promo code RFA10 for 10% off by 8/31. 💜 If you can't make it to Houston, you can still get involved by registering for the RFA Walk VIRTUALLY for free and raising funds right from the comfort of your own home! #togetherwewillweekend2024 #togetherwewillweekend #RFA24 #DTRF #Desmoidian #RFA #RFAwalkthewalk #crazysocks #desmoidtumorresearchfoundation #desmoidtumor #desmoidawareness #fundacure #fundraising #donate #desmoidresearch

When surgeries are appropriate, fresh desmoid tissue samples can be collected for research. Your fresh desmoid tumor tissue sample could hold the key to unlocking new discoveries about what drives desmoid tumors. With your prior online consent through Pattern.org, a small amount of excess tissue from your surgery will be collected and sent to a key research partner such as the Boehm Lab at the Koch Institute of MIT. 🔗 Learn more on our website: https://lnkd.in/gbWu7fkf #desmoidtumorresearch #research #DTRF #DesmoidTumorResearchFoundation #desmoid #desmoidtumor #desmoidawareness #aggressivefibromatosis #Desmoidian #desmoidresearch #FAP #familialadenomatouspolyposis #OrphanDisease #raredisease #sarcoma #sarcomaresearch #sarcomaawareness #oncology #hope #tissuedonation

💻 Register today for the upcoming Desmoid Tumor Awareness Month (DTAM) webinar hosted by the DTRF with special guest Dale R. Shepard, MD, PhD, Medical Oncologist from the Cleveland Clinic. Dr. Shepard oversees the early development of new cancer therapies including the genomic-based treatments and immunotherapies that are revolutionizing the care of patients with cancer. He sees nearly 200 sarcoma consults annually with patients from across the country including patients with desmoid tumors. This one-hour webinar will be held on September 5, 2024, from 4-5PM ET and will discuss “Biomarkers: Predicting tumor behavior and choosing therapies." Thank you to our DTAM Virtual Events sponsor, Recursion, for supporting this special awareness month. 🔗 Learn more about this webinar and register here: https://lnkd.in/e-389dc5 #DTAM #desmoidtumorawareness #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease

🏆 Creating an RFA Walk team is a tradition that keeps giving back! We are so excited to see our 2024 teams continue to raise funds, share their "why" behind fundraising, and spread awareness of desmoid tumors. Do YOU plan to create a virtual or in-person team this year? 📣 Special shoutout to our three Top Teams: Diane's Team to Defeat Desmoids, Kelli's Tumor Triumph Research Team, and The Green Group. We see you working so hard, keep going! 🔗 There's still time for YOU to join in the fun! Fundraise individually or create your team today! Register/fundraise for RFA Walk in Houston on Sept. 22nd or VIRTUALLY: https://bit.ly/2024RFAwalk #togetherwewillweekend2024 #togetherwewillweekend #DTRF #Desmoidian #RFA #desmoidtumorresearchfoundation #desmoidtumor #desmoidawareness #fundacure #fundraising #donate #desmoidresearch