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X-WR-CALDESC:Events for The Desmoid Tumor Research Foundation
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DTSTART;VALUE=DATE:20260920
DTEND;VALUE=DATE:20260921
DTSTAMP:20260728T165605Z
CREATED:20260727T174146Z
LAST-MODIFIED:20260728T165605Z
UID:10000054-1789862400-1789948799@dtrf.org
SUMMARY:Desmoid Defenders 5K Run/Walk
DESCRIPTION:Run for Awareness. Run for Research. Run for Hope.\nSeptember is Desmoid Tumor Awareness Month\, and the Desmoid Defenders 5K is an opportunity to bring our community together to support patients and families affected by desmoid tumors while helping advance critical research. \nParticipants can choose between a timed 5K Run or a 1-Mile Walk/Fun Run\, or if you can’t join us in person\, you can join from Home! Every registration includes an event participant T-shirt (must submit entry by 9/6/26.) Virtual at home participants’ event shirts will be mailed AFTER the in-person event and a shipping charge of $5 will be added to each registration. \nLearn more by downloading this flyer and register or donate here! 
URL:https://dtrf.org/event/desmoid-defenders-5k/
LOCATION:Queeny Park\, Saint Louis\, MO\, United States
CATEGORIES:Awareness,Caregivers,Connection,Fundraising,Patients,Virtual,Walk
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2026/07/ZoomWebsite-Event-_Banner.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260901T190000
DTEND;TZID=America/New_York:20260901T200000
DTSTAMP:20260813T132031Z
CREATED:20260813T131926Z
LAST-MODIFIED:20260813T132031Z
UID:10000055-1788289200-1788292800@dtrf.org
SUMMARY:DTAM Kickoff Event: Connecting Our Community
DESCRIPTION:Join the DTRF as we officially launch Desmoid Tumor Awareness Month (DTAM) with a virtual gathering centered on connection and shared experiences! Designed with input from DTRF Ambassadors\, this patient-centered event will welcome people at every stage of the desmoid tumor journey\, including those who are newly diagnosed\, longtime community members\, and caregivers. \nAttendees will take part in an interactive introduction and icebreaker activity led by special guest Christina Kosyla\, DTRF Board Member and desmoid tumor patient advocate. Then attendees will participate in meaningful small-group conversations in breakout rooms facilitated by DTRF Ambassadors. \nBreakout rooms will help connect attendees with others who share similar experiences and will be grouped by tumor location. There will also be a dedicated breakout room for caregivers. Together\, attendees will exchange insights\, discuss the realities of living with desmoid tumors\, and celebrate the strength and resilience of the desmoid community. \nThank you to our DTAM Kickoff Event sponsor\, SpringWorks Therapeutics\, for their continuous support of the desmoid tumor community. \nRegister today! \n  \nMedical Disclaimer: Desmoid tumors are complex and the information shared in this virtual event is not intended as medical advice for any individual problem\, or as a diagnosis\, treatment plan\, or recommendation for a particular course of action\, and this information should not be used as a substitute for professional medical advice and services. Please do not delay in seeking professional medical advice regarding your individual circumstances. 
URL:https://dtrf.org/event/dtam-kickoff-event-connecting-our-community/
CATEGORIES:Awareness,Caregivers,Connection,Patients,Virtual
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2026/08/ZoomWebsite-Event-_Banner-1.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260324T180000
DTEND;TZID=America/New_York:20260324T190000
DTSTAMP:20260302T154053Z
CREATED:20260302T154053Z
LAST-MODIFIED:20260302T154053Z
UID:10000047-1774375200-1774378800@dtrf.org
SUMMARY:Spread the Word: Educational Webinar
DESCRIPTION:Help us Spread the Word by joining the Desmoid Tumor Research Foundation on March 24th from 6-7 PM ET for an educational webinar exploring desmoid tumor diagnosis\, pathology classification\, and the real-world impact these distinctions have on treatment decisions and patient wellbeing. \nThis multidisciplinary discussion will examine how desmoid tumors are identified and categorized\, what that means for planning treatment and care\, and how classification can shape the patient experience from diagnosis forward. \nThe program will feature special guests:  \n\nMrinal Gounder\, PhD\, medical oncologist at Memorial Sloan Kettering Cancer Center\, presenting from the oncology perspective\nAshley Williams\, LCSW\, CTTP-II\, Co-Founder of The Desmoid Project\, addressing the psychosocial implications of diagnosis and treatment\nNarasimhan Agaram\, PhD\, sarcoma pathologist at Memorial Sloan Kettering Cancer Center\, sharing insights on how desmoid tumors are evaluated and classified at the tissue level.\n\nThe conversation will be moderated by Katie Doyle Myers\, DTRF Executive Director\, with guiding questions informed by DTRF Ambassadors and the broader desmoid community. \nThank you to our webinar sponsor\, SpringWorks Therapeutics\, for their continuous support of desmoid tumor educational content. \nRegister and submit your questions today!
URL:https://dtrf.org/event/spread-the-word-educational-webinar/
CATEGORIES:Awareness,Caregivers,Connection,Education,Patients,Virtual
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2026/02/STW_event-calendar.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260226T170000
DTEND;TZID=America/New_York:20260226T180000
DTSTAMP:20260302T154143Z
CREATED:20260202T210802Z
LAST-MODIFIED:20260302T154143Z
UID:10000044-1772125200-1772128800@dtrf.org
SUMMARY:Facebook/Instagram Live with Desmoid Warrior: Morgan B.
DESCRIPTION:Join us LIVE on Facebook and Instagram in honor of Rare Disease Day! \nOn Thursday\, February 26th at 5 PM ET\, Morgan will share her personal journey living with a desmoid tumor. She’ll discuss the challenges\, uncertainties\, and resilience that so many in the desmoid community know firsthand. \nThis live event is an opportunity to listen\, connect\, and ask questions in real time! Visit the Facebook Live link in our feed or watch our Instagram stories at the date & time of the event to tune in and hear from Morgan. \nTo make a significant impact on behalf of the patient community\, we invite you to attend this virtual event\, share our social content\, and Spread the Word with us! \nLearn more about the World Health Organization’s (WHO) classification of desmoid tumors\, which is listed under Table II – Fibroblastic/Myofibroblastic Tumours: https://pmc.ncbi.nlm.nih.gov/articles/PMC8167394 \nIf you would like to share your desmoid tumor journey with us\, please submit your story to be considered for a social media feature: https://bit.ly/DTRF-submit-story
URL:https://dtrf.org/event/facebook-instagram-live-with-desmoid-warrior-morgan-b/
CATEGORIES:Awareness,Caregivers,Connection,Education,Patients,Virtual
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2026/02/FB-Live_2-26.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250512
DTEND;VALUE=DATE:20251101
DTSTAMP:20250514T140610Z
CREATED:20250512T161848Z
LAST-MODIFIED:20250514T140610Z
UID:10000033-1747008000-1761955199@dtrf.org
SUMMARY:2025 RFA Virtual
DESCRIPTION:Running for Answers (RFA) is going VIRTUAL!\n\n\nEven though there won’t be an in-person run or walk this year\, help the DTRF carry on the RFA tradition and make a bigger impact by launching a virtual fundraiser today! \nRunning for Answers was founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009 and quickly became DTRF’s annual fundraising event. 2025 RFA Virtual offers something for everyone. You can build a team\, create an event or participate as an individual to spread awareness and fundraise for a cure! \n\n✨ Click here to make a difference and launch your fundraising page today. \nNote: RFA Virtual fundraising will conclude on October 31\, 2025. \n \n\n\n\nDon’t forget to register for the 2025 DTRF Together We Will Weekend!\nJoin us for the DTRF Together We Will Weekend in Chicago\, IL on September 12-13 (Fri/Sat)! Featured events include the DTRF International Research Workshop for medical and industry professionals\, along with the DTRF Annual Patient Meeting for all attendees. \nThe annual DTRF Together We Will Weekend brings together patients\, caregivers\, researchers\, clinicians and industry professionals to connect\, collaborate\, and learn together. \nThank you to our Presenting Sponsor\, SpringWorks Therapeutics for supporting this annual event. \n✨ Register Here
URL:https://dtrf.org/event/2025-rfa-virtual/
CATEGORIES:5K,Awareness,Caregivers,Connection,Fundraising,Patients,Virtual,Walk
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2025/05/RFA-event-calendar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250324T180000
DTEND;TZID=America/New_York:20250324T190000
DTSTAMP:20250305T173101Z
CREATED:20250305T173101Z
LAST-MODIFIED:20250305T173101Z
UID:10000031-1742839200-1742842800@dtrf.org
SUMMARY:Ask the Radiologist: A Q+A about Imaging
DESCRIPTION:The DTRF is excited to try new and different ways of sharing knowledge with the desmoid patient community. Join us for “Ask the Radiologist”\, a unique opportunity to virtually – face-to-face – speak with a leading radiologist about your desmoid tumor questions on Monday\, March 24th at 6PM ET. This conversation will be an *unrecorded* Zoom meeting (not a webinar) in Q&A format. \nRegister Here \nSpecial guest: \nRobert Lefkowitz\, MD\, is an Associate Professor of Radiology at Weill Cornell Medical College\, and a Clinical Member at Memorial Sloan Kettering Cancer Center. Also a member of DTRF’s Medical Advisory Board\, Dr. Lefkowitz specializes in abdominal and musculoskeletal imaging and he has a particular interest in imaging of soft tissue tumors. Currently\, he is involved in several prospective and retrospective research projects evaluating the treatment response of desmoid tumors to medical therapy and the associated changes seen on MRI. \nInstructions:  \n1. Before attending this Q&A\, please watch Dr. Lefkowitz’s 2023 Patient Meeting presentation\, “Imaging of Desmoid Tumors\,” by clicking this link: https://vimeo.com/881532231. \n2. After watching the video\, submit your questions when you register for this Q&A event. Dr. Lefkowitz will answer your questions about all things radiology from imaging modalities to scans. \nPlease Note:  \nA DTRF team member will facilitate this Zoom Meeting as an open forum\, Q&A. The meeting will not be recorded to maintain the confidentiality of its attendees’ personal information. \nEach desmoid tumor case is different. These conversations are not intended as medical advice for any individual problem or as a diagnosis\, treatment plan\, or recommendation for a particular course of action and should not be used as a substitute for professional medical advice and services.
URL:https://dtrf.org/event/ask-the-radiologist-a-qa-about-imaging/
CATEGORIES:Caregivers,Connection,Education,Patients,Virtual
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2025/03/Ask-the-radiologist.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250227T180000
DTEND;TZID=America/New_York:20250227T190000
DTSTAMP:20250212T191408Z
CREATED:20250212T191408Z
LAST-MODIFIED:20250212T191408Z
UID:10000029-1740679200-1740682800@dtrf.org
SUMMARY:Facebook Live with Desmoid Tumor Patient: Amy Beitz
DESCRIPTION:In honor of Rare Disease Day this year\, join us LIVE on Facebook on February 27th\, at 6 PM ET for a conversation with desmoid tumor patient\, Amy Beitz! You don’t want to miss Amy share her desmoid tumor story. To join the event and ask questions\, visit our Facebook Live Event link in our feed the week of the event. \nIf you would like to share your desmoid tumor journey with us\, please submit your story to be considered for a patient feature during this campaign: https://bit.ly/DTRF-submit-story \n \nTo make a significant impact on behalf of the patient community\, we invite you to attend this Facebook Live event\, share our social content\, and spread the word that desmoid tumors are NOT benign. \nLearn more about the World Health Organization’s (WHO) classification of desmoid tumors\, which is listed under Table II: Fibroblastic/Myofibroblastic Tumours: https://pmc.ncbi.nlm.nih.gov/articles/PMC8167394
URL:https://dtrf.org/event/facebook-live-with-desmoid-tumor-patient-amy-beitz/
CATEGORIES:Awareness,Caregivers,Connection,Education,Patients,Virtual
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2025/02/Fb-live_banner.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250129T130000
DTEND;TZID=America/New_York:20250129T140000
DTSTAMP:20241118T154922Z
CREATED:20241118T154830Z
LAST-MODIFIED:20241118T154922Z
UID:10000026-1738155600-1738159200@dtrf.org
SUMMARY:DTRF Lunch N' Learn: "Reproductive/fertility considerations for desmoid tumor patients"
DESCRIPTION:During this virtual event\, Dr. Laurie McKenzie will share how you can obtain a fertility assessment before and after treatment for desmoid tumors. She will share fertility preservation options available for both men and women. Also\, she’ll provide some additional reliable resources in terms of fertility preservation options and reproductive considerations. \nThis will be a recorded webinar. Dr. McKenzie will speak for roughly 15 minutes and there will be lots of time for Q&A. Bring your lunch and your questions for this important discussion. Special thank you to SpringWorks Therapeutics for sponsoring this event.  \nDr. Laurie J. McKenzie is an Associate Professor in the Department of Gynecologic Oncology and Reproductive Medicine at University of Texas MD Anderson Cancer Center\, and holds a joint appointment in the Division of Reproductive Endocrinology and Infertility at Baylor College of Medicine. She is former chair of the Scientific program for ACOG’s Annual Clinical Meeting\, board examiner for ABOG and serves on multiple national committees. She has authored numerous articles in peer-reviewed journals and serves as a reviewer for the Journal of Assisted Reproduction and Genetics and Fertility and Sterility. Dr. McKenzie’s primary research interest is assessing the ovarian toxicity of cancer therapeutics. Her clinical practice at MD Anderson Cancer Center encompasses fertility counseling and preservation prior to cancer treatment as well as family-building services for men and women. \nTo learn more\, register\, and submit a question in advance: https://bit.ly/DTRFlunchnlearn
URL:https://dtrf.org/event/dtrf-lunch-n-learn-reproductive-fertility-considerations-for-desmoid-tumor-patients/
CATEGORIES:Awareness,Caregivers,Connection,Education,Patients,Virtual
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2024/11/Lunch-n-learn.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240922T073000
DTEND;TZID=America/Chicago:20240922T103000
DTSTAMP:20240521T144819Z
CREATED:20240425T161510Z
LAST-MODIFIED:20240521T144819Z
UID:10000015-1726990200-1727001000@dtrf.org
SUMMARY:2024 RFA Walk
DESCRIPTION:The 2024 RFA Walk offers something for everyone; build a team\, participate as an individual\, create awareness\, and help fundraise for a cure!\nRunning for Answers (RFA)\, founded in Philadelphia by desmoid tumor patient Sera Snyder in 2009\, is the annual DTRF signature fundraising event. This year\, the desmoid tumor patient community and supporters will come together for the first-ever walk at the Houston Zoo as a unified force against desmoid tumors. \nRegister today and claim your fundraising page to start raising awareness\, powering research\, and advocating for desmoid tumor patients! \nDon’t forget to register separately for the DTRF Together We Will Weekend!
URL:https://dtrf.org/event/2024-rfa-walk/
LOCATION:Houston Zoo\, 6200 Hermann Park Drive\, Houston\, TX\, 77030\, United States
CATEGORIES:Awareness,Caregivers,Clinicians,Connection,Fundraising,Patients,Researchers,Virtual,Walk
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2024/04/RFA_EVENT_tile.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240713
DTEND;VALUE=DATE:20240714
DTSTAMP:20240530T115949Z
CREATED:20240530T115949Z
LAST-MODIFIED:20240530T115949Z
UID:10000016-1720828800-1720915199@dtrf.org
SUMMARY:Athina's Ride
DESCRIPTION:Athina’s Ride is a cycling event that starts with training rides in the spring and culminates on July 13/14th weekend. You can either complete the ride on your own\, with family & friends or join our ride led by Athina Merckx on the Saturday July 13th in Penticton\, British Columbia. Come join Athina and support her and other Desmoid patients in the fight to find a cure. \nDetails: This ride will be a casual 30 km route around Naramata bench. If you want more of a challenge raise $1000 and you will receive a free entry into the Okanagan Granfondo on Sunday July 14th and can choose from 4 distances. Ride by yourself\, with some friends or along with the Okanagan Granfondo ride. You can ride indoors on a trainer or outdoors (and manually log it or use platforms like Strava to automatically upload your rides). You’ll sign up\, choose your distance\, and start training anytime up until July 14th.
URL:https://dtrf.org/event/athinas-ride/
LOCATION:Penticton B.C.
CATEGORIES:Awareness,Connection,Fundraising,Patients,Virtual
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2024/05/Athinas-ride_blog.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240417T193000
DTEND;TZID=America/New_York:20240417T210000
DTSTAMP:20240319T194121Z
CREATED:20240319T194121Z
LAST-MODIFIED:20240319T194121Z
UID:10000010-1713382200-1713387600@dtrf.org
SUMMARY:DTRF "Speed Desmoidian-ing" Virtual Networking Event for Adolescents & Young Adults
DESCRIPTION:Join the DTRF for the second night of the two-part event: “Times Are A-Changin’: Heading into Young Adulthood with a Desmoid Tumor.” \nTune in for a special “Speed Desmoidian-ing” virtual networking event just for young adults with desmoid tumors facilitated by two of their peers. \nIncludes: 1-on-1 Breakout Rooms and Group Discussion to connect with other participants \nFacilitators & Patient Advocates: Dakota Fisher-Vance and Chad Guzzi \nClick here to register today!  \nNOTE: To promote connectedness and trust throughout the networking event\, this meeting will not be recorded. Throughout this special event\, our hope is that you will feel a sense of belonging and community as you discuss your unique journey with fellow desmoid tumor patients.
URL:https://dtrf.org/event/dtrf-speed-desmoidian-ing-virtual-networking-event-for-adolescents-young-adults/
CATEGORIES:Education,Patients,Virtual
ATTACH;FMTTYPE=image/png:https://dtrf.org/wp-content/uploads/2024/03/Zoom_Banner_AYA-copy.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230401T000000
DTEND;TZID=America/New_York:20230930T000000
DTSTAMP:20230915T205409Z
CREATED:20230915T204204Z
LAST-MODIFIED:20230915T205409Z
UID:10000006-1680307200-1696032000@dtrf.org
SUMMARY:RFA Virtual Challenge
DESCRIPTION:CanÕt make it to the RFA 5K& Fun Run? The RFA Virtual Challenge provides an opportunity to fundraise virtually for desmoid tumor research. We encourage you to become an RFA ÒChallengerÓ and choose your own unique way to work towards a fundraising goal. This virtual campaign culminates in a LIVE online ceremony days after the in-person DTRF Together We Will Weekend celebrating the community with speakers\, awards\, and patient spotlights!
URL:https://dtrf.org/event/rfa-virtual-challenge/
CATEGORIES:Fundraising,Virtual
ATTACH;FMTTYPE=image/jpeg:https://dtrf.org/wp-content/uploads/2023/09/EventsCal_RFA-Challenge.jpg
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