The Desmoid Tumor Research Foundation

2024 International Research Workshop

Research Workshop

The DTRF International Research Workshop features:

  • Scientific talks on current research and treatment
  • A forum to share research findings, develop new collaborations, bring new scientists into the desmoid tumor research field, and discuss innovations that will lead to new treatments
  • Live questions/answers and discussions related to the scientific talks
  • Group discussions focusing on gaps in desmoid tumor science and how best to address them through high-impact collaborative research

The DTRF International Research Workshop is part of the DTRF Together We Will Weekend. In order to attend the Workshop, you need to register for the Weekend.

The 2024 RFA Walk offers something for everyone; build a team, participate as an individual, create awareness, and help fundraise for a cure!

Running 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.

Register today and claim your fundraising page to start raising awareness, powering research, and advocating for desmoid tumor patients!

Don’t forget to register separately for the DTRF Together We Will Weekend!

Founded in 2007, the annual DTRF Patient Meeting is our signature patient support event of the DTRF Together We Will Weekend.

It always takes place on Saturday, the day before our annual RFA Walk. The meeting includes educational presentations by clinicians and researchers, with questions from the audience, as well as a talk by a desmoid patient.

Content is geared toward topics of interest to our patient and caregiver community. Physicians are also strongly encouraged to attend this foundational event of the Weekend. This meeting will be recorded and available on our website in the weeks following the event.

The Patient Meeting is part of the DTRF Together We Will Weekend. In order to attend the Meeting, you need to register for the Weekend.

Together we will advance research, empower our community with information, foster connection, and fundraise for a cure.

We are excited to announce the DTRF Together We Will Weekend and RFA Walk is moving to Houston, TX on September 20-22, 2024!

Events include the DTRF International Research Workshop for medical and industry professionals, along with DTRF Patient Meeting for all attendees.

The annual DTRF Together We Will Weekend brings together patients, caregivers, researchers, clinicians and industry professionals to connect, collaborate, and learn!

Early bird registration is officially OPEN! Use code TWWHOUSTON20 at checkout for 20% off registration. REGISTER here!

Jeanne Whiting, DTRF Executive Director Emeritus, and Lynne Hernandez, DTRF Executive Director, attended CTOS 2023 in Dublin, Ireland, November 1-4.

The team was honored to connect and collaborate with other patient advocacy groups, researchers, and industry professionals. The conference felt full of energy and the promise of accelerating the science toward more treatment options for desmoid tumors and all sarcoma patients.

Last year’s designation of desmoid tumors as Sarcoma of the Year propelled a year of groundbreaking research in our rare disease. Researchers from varied backgrounds presented multiple scientific posters about desmoid tumors.

SpringWorks Therapeutics Medical Science Liaison Mitchell Allen, PhD and DTRF Executive Director, Lynne Hernandez

The DTRF Patient Registry poster titled, “Characterizing the Patient Journey To Diagnosis of Desmoid Tumor: Desmoid Tumor Research Foundation Natural History Study” was presented at CTOS 2023 by SpringWorks Therapeutics Medical Science Liaison Mitchell Allen, PhD (pictured with Lynne Hernandez, DTRF Executive Director). It won first place in Category 1: Improving Sarcoma Care Globally!

This honor would not have happened without the participation of desmoid tumor patients and caregivers. They are the backbone of this research. Their vast and varied experiences are critical in guiding topics of future desmoid tumor research, and the DTRF is committed to elevating the patient voice wherever we can.

The poster was created in partnership with SpringWorks Therapeutics under the leadership of the DTRF’s Principal Investigator for the Registry, Kelly Mercier, Ph.D., and the poster’s first author, Shengfan Zhou, MS (SpringWorks).

Each year, with the guidance of our Scientific Advisory Board and other advisors, the DTRF awards grants to promising research projects in desmoid tumor science. These are often multi-year grants and in some cases are funded in partnership with Desmoid Tumour Foundation of Canada (DFC).

The DTRF is pleased to announce our research grants awarded in 2023:

For more information, visit our Funded Grants page.

THANK YOU to our global desmoid tumor community of patients, care partners, researchers, and medical professionals, who traveled to Philadelphia and participated in the DTRF Together We Will Weekend. It was wonderful to be in-person again! We are grateful to our platinum event sponsor, SpringWorks Therapeutics, for making the Weekend possible!

Together we advanced research, connected, empowered ourselves, and fundraised for a cure, while celebrating our community and Desmoid Tumor Awareness Month!

  • September 22, 2023 – DTRF International Desmoid Tumor Research Workshop: Dedicated clinicians and researchers from around the world attended the 10th Annual DTRF International Desmoid Tumor Research Workshop, presenting on the latest desmoid tumor science and research advances. We’re honored to host this important collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities. Learn more about the annual DTRF International Desmoid Tumor Research Workshop.
  • September 23, 2023 – DTRF Patient Meeting: At the heard of our Weekend, patients, caregivers, clinicians and researchers gathered to connect, collaborate and learn together. Presentations on research, treatments, and a special presentation on the patient experience. Recordings of these educational events (including live Q&A) are available on our Patient Meeting Presentation/Media page.
  • 2023 RFA Virtual Champions Awards Ceremony: Scheduled for Sunday, September 24, 2023, the RFA 5K & Fun Run was cancelled due to a named storm on the East Coast, and we had to pivot to 100% virtual fundraising. Our community did not disappoint. Together, more than $63,000 was raised for desmoid tumor research! On November 2nd, the ceremony was streamed LIVE on Facebook! | WATCH

The work continues to find better treatments and, one day, a cure for each and every desmoid tumor patient! Once again, on behalf of the DTRF team, THANK YOU!

Desmoid tumor research received well-deserved attention at the 2023 American Society of Clinical Oncologists (ASCO) annual conference. Data supporting the efficacy of nirogacestat were the focus of several presentations at the this year’s event. SpringWorks Therapeutics’ New Drug Application for nirogacestat is currently under review by the FDA.

In an interview with OncLive, Bernd Kasper, MD, PhD, Mannheim University Medical Center, University of Heidelberg, Germany, discusses the effect of nirogacestat on tumor volume and T2 hyperintensity in patients with desmoid tumors. | WATCH

OncLive also published an article titled, “Nirogacestat Provides Rapid and Sustained Pain Reduction for Patients With Desmoid Tumors,” summarizing the poster presentation by Winette T.A. Van Der Graaf, Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, Netherlands, et. al. | READ

Desmoid tumors were the subject of several poster presentations and discussion during the Sarcoma Track of ASCO 2023, on Saturday, June 3rd.

Tumor volume and T2 hyperintensity changes from DeFi: A phase 3, randomized, controlled trial of nirogacestat in patients with desmoid tumors
Thierry Alcindor, MD, MSc, McGill University Health Center, et. al.
Abstract: https://meetings.asco.org/abstracts-presentations/218369
Poster: https://dtrf.org/wp-content/uploads/2023/10/Alcindor_DeFi-Tumor-Volume-_-T2_2023-ASCO_Poster_FINAL.pdf
Poster supplement: https://dtrf.org/wp-content/uploads/2023/10/Alcindor_DeFi-Tumor-Volume-_-T2_2023-ASCO_Supplemental.pdf

Impact of nirogacestat on pain, a key symptom in patients with desmoid tumors (DT): Results from the phase 3 DeFi study
Winette T.A. Van Der Graaf, Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, Netherlands, et. al.
Abstract: https://meetings.asco.org/abstracts-presentations/220655
Poster: https://dtrf.org/wp-content/uploads/2023/10/van-der-Graaf_DeFi-Pain_2023-ASCO_Poster_FINAL.pdf

RINGSIDE phase 2/3 trial of AL102 for treatment of desmoid tumors (DT): Phase 2 results
Mrinal M. Gounder, MD, Memorial Sloan Kettering Cancer Center, et. al.
Abstract: https://meetings.asco.org/abstracts-presentations/218382

A phase II basket trial of dual anti–CTLA-4 and anti–PD-1 blockade in rare tumors (DART) SWOG S1609: The desmoid tumors (cohort 27)
Young Kwang Chae, Northwestern University, Chicago, IL, et. al.
Abstract: https://meetings.asco.org/abstracts-presentations/220010

Impact of pregnancy in women with desmoid fibromatosis: An international retrospective observational study
Marco Fiore, MD, FACS, Sarcoma Service, Fondazione IRCCS Istituto Nazionale dei Tumori, et. al.
Abstract: https://meetings.asco.org/abstracts-presentations/218386

Famitinib for familial adenomatous polyposis-associated aggressive desmoid tumors: A single-center exploratory study
Sai Ge, Department of Gastrointestinal Oncology, Key laboratory of Carcinogenesis and Translational Research (Ministry of Education), Peking University Cancer Hospital & Institute, Beijing, China, et. al.
Abstract: https://meetings.asco.org/abstracts-presentations/218434

The annual DTRF Together We Will Weekend is September 22-24! We hope you’re already making plans to be there with us in Philadelphia, but just in case you need a little convincing, here are the top 5 reasons to attend!

1. To connect.

Patients often say that the moment they first met another desmoid tumor patient in person is the moment they stopped feeling alone.

When you attend the annual DTRF Together We Will Weekend, you will meet other desmoid tumor patients (perhaps for the very first time), connect more deeply with those you already know, and/or be the veteran patient that shares your experience and wisdom with someone newly diagnosed. Whatever your circumstances, these personal connections are invaluable and can make this journey a little easier.

This is the largest annual gathering of desmoid tumor patients in the world. Be a part of this foundational weekend!

2. To be part of something bigger.

Every attendee arrives with one significant thing in common: first-hand, personal experience with desmoid tumors. So, even if you come by yourself and you’re not an extrovert, it’s easy to connect with others quickly and naturally build your community of support.

Stickers colored to represent the location of your tumors are available to add to your name tag, making it simple to find others with a similar experience. The DTRF Together We Will Weekend is a warm and welcoming space for all affected by this rare disease and the perfect place to get to know your community!

This year, fostering collaboration between our patients/caregivers and our desmoid tumor experts is a top priority, because we all have the same goal of working together to improve outcomes and eventually find a cure for desmoid tumors. It will take every facet of our community to reach that goal, so let’s connect, collaborate and learn from each other!

3. To empower yourself.

Being your own best advocate means staying abreast of the latest advancements in desmoid tumor research and treatments.

The experts attending the DTRF Together We Will Weekend present on new research, promising medical therapies, upcoming clinical trials, and brand new therapeutic options, often months, sometimes years, before they become widely known in the field. Desmoid tumor research is advancing every single year and therefore no annual event is alike.

Gain the knowledge you need to ask the right questions, become aware of cutting-edge research to share with your physicians back home, and make informed future treatment decisions.

4. To learn and share.

Our distinguished speakers are leaders in the field of desmoid tumors and their presentations aim to deliver the most updated information on research, potential treatments and ways to help our community find answers.

Cryoablation, HIFU, Nexavar, nirogacestat (SpringWorks Therapeutics’ gamma-secretase inhibitor), and AL102 (Ayala Pharmaceuticals’ gamma-secretase inhibitor) were all presented at DTRF Patient Meetings months, in some cases years, before becoming widely known in the field.

One of the best ways a patient can ensure proper treatment is by staying up to date on the research and advancements in the field. Patients often feel more confident making difficult treatment decisions when they can also consider what is on the horizon.

During DTRF Together We Will Weekend, the learning flows both ways. The weekend is structured as an ongoing conversation between experts and patients, an information exchange that benefits our entire community. This is your chance to ask some of the top physicians and researchers your questions in person and share your unique desmoid tumor experience.

5. To celebrate our community, raise awareness and have fun at the RFA 5K Run & Walk!

Now that we are meeting in person again (finally), our annual weekend will culminate with the RFA 5K Run & Walk. Don’t let the name fool you, we welcome ALL types of participation. Our accessible course in beautiful Fairmount Park, Philadelphia provides the perfect backdrop for a day of fun and celebration. Even some of our medical and industry partners are bringing teams this year! Yes, the kids’ Fun Run will be back too! Click here to register for RFA.

Can I still fundraise?

Absolutely! Just like the “virtual” years after Covid, you have the option to create a personal fundraiser to encourage giving. Click here to register for RFA, share your challenge with your friends and family, and join our RFA Champions Chat on Facebook to connect with other Champions who are fundraising virtually. The RFA awards ceremony on 9/24 will be live streamed from Philadelphia–virtual fundraisers are included!

Location: Being in Old City Philadelphia is NEW & Different

Old City Philadelphia is the perfect place to visit with your family for the DTRF Together We Will Weekend. It is quaint, and has so many historical landmarks in a small footprint. Step right outside the hotel for local tours and cobblestone walkways. When you’re not networking with us, you’ll be soaking up autumn in our nation’s birthplace.

New Event: Tour of Old City, Philadelphia

Since our hotel is in the historic district, we are organizing an optional walking tour for Friday afternoon. See the sights and connect with fellow patients and caregivers. More details to follow! 

New Event: Welcome Reception & Weekend Kickoff

We invite everyone to gather for happy hour and light appetizers on Friday evening from 5:00-6:30 pm. After three years of being virtual, this evening event will allow the DTRF to formally welcome patients, their family members, clinicians, researchers and industry professionals to Philadelphia. Let’s kick off the weekend with connection and comradery as we celebrate being together once again!

Who will be there? Patients, Caregivers, Clinicians, Researchers & Industry Partners are Invited

Is there an additional cost? No, this is included in your weekend registration.

New Event: Early Morning Meditation & Stretching

After Friday’s travel, the Welcome Reception, and a good night’s sleep, we invite all Weekend attendees to join us Saturday morning, from 7:00-8:00 am to relax, center, and set your intentions for an exciting day ahead of learning and connecting.

Who will be there? Patients, Caregivers, Clinicians, Researchers & Industry Partners are invited

Is there an additional cost? No, this is included in your weekend registration.

New Event: “Meet the Doctors and Researchers” Networking Breakfast

On Saturday from 8:00-9:30 am, patients will have the opportunity to meet each other as well as doctors and researchers. Over coffee and an informal breakfast, you’ll have the chance to sit at roundtables where you can share experiences and ask general questions about treatment options, tumor locations, research, and other things on your mind. Each roundtable will cover a different topic.

Note that each desmoid tumor case is different. These conversations are not intended to answer questions about or offer 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 your own healthcare team’s advice and services. 

Who will be there? Patients, Caregivers, Clinicians, Researchers & Industry Partners are invited

Is there an additional cost? No, this is included in your weekend registration.

New This Year: Fees for Registration

This is the first year we have implemented a registration fee for our annual weekend. As we began planning the Weekend, we knew we wanted it to be transformative for our entire community. The registration fee allows us to offset increased costs of providing opportunities for our patients and caregivers to have conversations with our clinicians and researchers, sharing experiences about what it means to live with, treat and research this disease

20% early bird discounts for both the Weekend and the RFA 5K & Fun Run are available through 4/30/23, and the DTRF is subsidizing the hotel room cost by $50/night. We hope that these accommodations will help you all come and enjoy this inspiring weekend. 

“I let others see these vulnerabilities and it brings them into the journey with me. And by sharing my story and some of my tears, and all of my pains, others come to understand how important the research is to me and to all of us.”

Rachel S.

What hasn’t changed?

The DTRF International Research Workshop

On Friday, clinicians and researchers will take part in the DTRF International Research Workshop. Designed for researchers and medical professionals, this critically important, collaborative event is a meeting of some of the brightest minds in desmoid tumor research and treatment from a variety of disciplines. The Research Workshop not only presents the latest information on desmoid treatments and research, and facilitates new collaborations to move the science forward, it also helps the DTRF identify research priorities for the coming years. Participants in the Research Workshop are invited to the Welcome Reception which follows, and then a special dinner off-site to continue important conversations and collaborations.

“Thanks so much for all of your efforts, the meeting was truly fantastic and I made new connections which will help desmoid research to move forward.”

DTRF Research Workshop Attendee

Community Networking Event for Patients & Caregivers

We’ve heard many times that this weekend provides opportunities for patients to feel that they’re not battling this disease alone. They’ve stated that our events are the first time they’d ever met someone else who truly “gets it.” Our Community Networking Event for Patients & Caregivers provides connection with others who share common experiences.

“I loved this opportunity to connect with other desmoid patients and caregivers! I appreciated the conversation prompts, and especially enjoyed having one-on-one conversations with a variety of people.”

DTRF Together We Will Weekend Attendee

The DTRF Patient Meeting

Founded in 2007, the DTRF Patient Meeting is our signature patient support event. The meeting includes educational lectures by leading clinicians, researchers, and other stakeholders. Content is geared toward topics of interest to our patient and caregiver community, and physicians are also encouraged to attend this foundational event of the Weekend. This meeting will be recorded and available on our website in the weeks following the event.

Finally, the RFA 5K & Fun Run, formerly known as Running for Answers, is back on the ground in Philadelphia! Fundraise for the DTRF while you run, walk or roll your way around Fairmount park. Share your fundraising page with friends and family near and far. Let’s see how much fun we can have while we fundraise for a cure. Wear your crazy socks and be prepared for lots of laughs, and don’t forget the free cheesesteaks and ice cream! No Philly event is complete without a tasty reward. You will have earned it!

“Giving back through raising funds for the DTRF helped me find some purpose despite the many horrible facets of a desmoid tumor diagnosis.”

Meredith B.

This weekend is jam packed with events designed to bring you together in the most educational, collaborative and supportive ways. We will see you in Philly!!

THANK YOU to our global desmoid tumor community of patients, care partners, researchers, and medical professionals, who attended and participated in the DTRF Together We Will Virtual Weekend. We are grateful to our platinum event sponsor, SpringWorks Therapeutics, for making the Weekend possible! #DTRFWeekend2022

Together we advanced research, connected, empowered ourselves, and fundraised for a cure, while celebrating our community and Desmoid Tumor Awareness Month!

  • 2022 DTRF International Desmoid Tumor Research Workshop: 160 dedicated physicians and researchers from more than 25 countries registered for our virtual 9th Annual DTRF International Desmoid Tumor Research Workshop! We’re honored to be able to host this important collaborative meeting each year, which helps steer the direction of desmoid tumor research and the Foundation’s funding priorities. Learn more about the annual DTRF International Desmoid Tumor Research Workshop.

If you couldn’t join us last weekend, here’s how you can access the recorded events:

  • 2022 DTRF Annual Patient Meeting Webinars 1, 2, & 3: The recordings of these educational events (including live Q&A) are available to view (along with transcripts) on our Patient Meeting Presentation/Media page.
  • 2022 DTRF RFA Virtual Challenge Ceremony: The ceremony was streamed LIVE on Facebook! Watch the recording of the entire ceremony. It’s sure to brighten your day! Thanks to the hard work of our RFA Challengers, and the generosity of other donors and sponsors, we’ve raised more than $130K, with donations still rolling in. Please note that your fundraising pages will stay open for a few months, so we encourage you to keep going! Or, start a Facebook fundraiser with one click.

The work continues to find better treatments and, one day, a cure! Once again, on behalf of the DTRF team, THANK YOU!

Registration is *NOW OPEN* at DTRF.org/weekend for the 2022 DTRF Together We Will Virtual Weekend (Sept. 23-25), kicking off our summer-long RFA Virtual Challenge virtual fundraiser!

As a reminder, the primary events of our signature September weekend will be held *virtually* once again. However, we also hope to host a special, outdoor, in-person community event at Fairmount Park in Philadelphia on the morning of Sunday, September 25th.

Plan to join your community this fall, and TOGETHER WE WILL…

  • CONNECT patients and care partners from across the globe at our International Virtual Community Networking Event.
  • EMPOWER OURSELVES with information from top physicians and researchers studying and treating desmoid tumors at the signature DTRF Annual Patient Meeting Webinars.
  • FUND A CURE all summer long with the #RFAVirtualChallenge community fundraiser! Go the #Distance4Desmoids and we’ll celebrate with a LIVE virtual ceremony to close the Weekend. Learn more.
  • ADVANCE RESEARCH by hosting some of the brightest researchers and medical professionals from across the globe at the DTRF International Desmoid Tumor Research Workshop. (*Researchers and medical professionals ONLY*)

Stay informed by adding us to your Favorites on Facebook and signing up to receive our emails.

Learn more about the Weekend events.

(#DTRFWeekend2022)