DTRF "together we will" weekend
Welcome!
The Desmoid Tumor Research Foundation is pleased to announce that, for the first time since 2019, we will be convening in-person in Philadelphia!
We invite our global community of patients, caregivers, clinicians and researchers to join us for the annual DTRF Together We Will Weekend and RFA 5K & Fun Run from September 22nd- 24th.
Join our community of patients and doctors for exciting events designed to inspire learning and connection, and to foster collaboration toward better treatments and a cure for desmoid tumors. Weekend events include the DTRF Int’l Research Workshop for clinicians and researchers, along with the DTRF Patient Meeting for all attendees.
Registrations for the DTRF Together We Will Weekend and RFA 5K & Fun Run) are open NOW! Each event has its own registration, so be sure to register for both. Hotel rooms will be in high demand, so book your hotel ASAP as well.
Check out the agenda below and mark your calendars. We look forward to seeing you in Philadelphia!
Please contact us at info@dtrf.org with any questions.
DTRF Together We Will Weekend
Event Schedule
Friday, September 22nd
11:00 am- 5 pm: DTRF Int’l Research Workshop for Clinicians, Researchers and Industry Professionals
(This is the only Weekend event that will be In-Person ***AND Virtual***)
Designed for researchers and medical professionals, this critically important, collaborative event is a meeting of some of the brightest minds in desmoid tumor research from a variety of disciplines. The Research Workshop 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.
Medical students interested in studying desmoid science are welcome to attend as well.
Stay tuned for our list of presenters.
5:00 pm – 6:30 pm: Welcome Reception & Weekend Kickoff for All Weekend Attendees
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 kickoff the weekend with connection and comradery as we celebrate being together once again! Enjoy drinks and appetizers as you settle in for the DTRF Together We Will Weekend.
Saturday, September 23rd
7:00 am- 8:00 am: Meditation & Stretching for All Weekend Attendees
After yesterday’s travel, the DTRF Welcome Reception, and a good night’s sleep, we invite all Weekend attendees to join us for this morning event to relax, center, and set your intentions for an exciting day ahead of learning and connecting.
8:00 am- 9:30 am: “Meet the Doctors and Researchers” Networking Breakfast for All Weekend Attendees
Over coffee and an informal breakfast, researchers and clinicians will answer questions about treatment options, tumor locations, and research. Patients will have the opportunity to meet each other and share experiences. Each roundtable will cover a different topic.
Each 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.
10:00 am- 11:00 am: 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.”
This networking event will allow patients and caregivers to connect in small groups.
10:00 am- 11:00 am: DTRF Scientific and Medical Advisory Board Meeting (Closed meeting for Foundation Advisors only)
1:00 pm – 6:00 pm: DTRF Patient Meeting for All Weekend Attendees
Founded in 2007, the Annual DTRF Patient Meeting is the annual signature patient support event. It includes educational lectures by leading clinicians, researchers, and other stakeholders. Content is geared toward our patient and caregiver community, but all are encouraged to attend this foundational event of the weekend.
Stay tuned for our list of presenters.
Sunday, September 24th
8:00 am: RFA 5K & Fun Run for All Weekend Attendees (REGISTER HERE)
Join us for our first official race day since 2019! RFA, founded by desmoid tumor patient Sera Snyder in 2009, is the annual DTRF signature fundraising event. Our community comes together in Philadelphia to walk, run, and roll together as a unified force against desmoid tumors. By participating in RFA, anyone can build a team, create awareness, and help fundraise for a cure!
Read our blog for updates about the Weekend.
Learn more about past Patient Meetings below.
This year, once again, DTRF hosted its annual events virtually.
The DTRF Together We Will Virtual Weekend included the same events our community knows and loves, with a few big changes that made the entire experience accessible for anyone, anywhere with an internet connection. We thank you for putting on your virtual fundraising hat this summer!
The 2022 DTRF Together We Will Virtual Weekend
Together We Will… CONNECT
Saturday, September 24th
DTRF Virtual International Community Networking Event (via Zoom)
This 90-minute structured networking event was a great opportunity for patients and caregivers to see and hear each other live. This event was produced in partnership with the following desmoid tumor patient advocacy organizations: Sachin Sarcoma Society (India), Desmoide Brasil (Brazil) and Contactgroep Desmoid (Netherlands). Facilitators, including American desmoid survivor, F.A.P. survivor, and patient advocate, Dakota Fisher-Vance, guided the discussion and provided breakout groups based on language and geographical location. This was also a chance to connect personally, one-on-one, with other patients and care partners.
Together We Will… EMPOWER OURSELVES
Saturday, September 24th
Three DTRF Patient Meeting Webinars
Patients and caregivers were invited to join us for THREE 90-minute webinars. They learned from our panelists and participated in the Q&As. Both of webinars featured presentations on key topics relating to desmoid tumor patients.
Patient Meeting Webinar #1
Featured topics:
Desmoid Tumors 101 presented by Seth Pollack, MD, Director of the Sarcoma Program, Lurie Cancer Center, Northwestern University
Suggested Questions For Your Doctors: A Patient’s View presented by Bill Lundgren, Desmoid tumor care partner
Tissue Donation Through Pattern.org presented by Barbara Van Hare, Director of Partnerships, The Rare Cancer Research Foundation
Sharing Your Desmoid Journey presented by Kelly Mercier, PhD, Chair, Coordinating Center, The Desmoid Tumor Research Foundation
Patient Meeting Webinar #2
Featured Topics:
The Tumor Board: A Multidisciplinary Treatment Approach presented by University of Pittsburgh Hillman Cancer Center
Nirogacestat for the Treatment of Desmoid Tumors presented by Ravin Ratan, MD, Associate Professor, Sarcoma, MD Anderson Cancer Center
Initial Results of RINGSIDE, a Phase 2/3 Trial of AL102 for Treatment of Desmoid Tumors presented by Mark Agulnik, MD, Professor and Section Chief of the Sarcoma Program, Department of Medical Oncology and Therapeutics Research, City of Hope
Cryoablation as a Treatment for Desmoid Tumorspresented by Joseph Erinjeri, MD, Interventional Radiologist & Physician Scientist, Memorial Sloan Kettering Cancer Center
Patient Meeting Webinar #3
Featured Topics:
Building Resilience: Psychosocial Issues in Desmoid Disease presented by Karen Hurley, PhD, Clinical Psychologist, Center for Adult Behavioral Health, Neurological Institute, Cleveland Clinic
Medical decision making for systemic treatment of FAP-associated desmoid tumors presented by Dale R. Shepard, MD, PhD, FACP, Director, Phase I and Sarcoma Programs, Cleveland Clinic Taussig Cancer Institute
Surgical considerations for desmoid disease in familial adenomatous polyposis presented by Joshua Sommovilla, MD, Associate Staff & Colorectal Surgeon, Cleveland Clinic
Together we will… FUND A CURE!
June-September
Thank you for taking the #RFAVirtualChallenge! When attendees signed up for the Weekend, they automatically received an email to launch their own online fundraising pages. Then they chose their RFA Challenges!
Monday, September 26th
RFA Virtual Challenge Ceremony
The finale of the Virtual Weekend and our summer-long fundraising extravaganza! Awards were given, patients and team Challenges were spotlighted, and we celebrated our community in the uplifting spirit of RFA.
Watch the recording below!
Event Sponsor
For the second year in a row, DTRF hosted its annual events virtually.
The DTRF Together We Will Virtual Weekend included the same events our community knows and loves, with a few big changes that made the entire experience accessible for anyone, anywhere with an internet connection. We thank you for putting on your virtual fundraising hat this summer!
The 2021 DTRF Together We Will Virtual Weekend
Together We Will… CONNECT
Friday, September 24th
DTRF Virtual Community Networking Event (via Zoom)
This 90-minute structured networking event was a great opportunity for patients and caregivers to see and hear each other live.
Together We Will… EMPOWER OURSELVES
Saturday, September 25th
Two DTRF Patient Meeting Webinars (Watch webinar below)
Patients and caregivers were invited to join us for TWO 90-minute back-to-back webinars. They learned from our panelists and participated in the Q&As. Both of webinars featured presentations on key topics relating to desmoid tumor patients.
Patient Meeting Webinar #1 (Watch webinar below)
Featured topics and Time Code Links:
WATCH: An Overview of Medical Desmoid Tumor Treatments with Dr. Bernd Kasper (Mannheim University Medical Center, Germany)WATCH: Cryoablation with Dr. Afshin Gangi (University Hospital Strasbourg, France)
WATCH: Ayala Pharmaceuticals’ Phase 2/3 Clinical Trial for Desmoid Tumors using AL102 (a gamma-secretase inhibitor) with Dr. Gary Gordon and Dr. Jason Kaplan (Ayala Pharmaceuticals)
WATCH: The International Pregnancy Study with Marianna Coppola (Desmoid Foundation of Italy) & Dr. Chandrajit Raut (Dana Farber Cancer Institute)
Patient Meeting Webinar #2 (Watch webinar below)
Featured Topics and Times:
WATCH: Learning about the Clinical Trial Experience with Dr. Rashmi Chugh (University of Michigan) & Jon Fields, a Clinical Trial Participant
WATCH: Learning about Compassionate Use with Dr. Ravin Ratan (MD Anderson Cancer Center) & Amanda Hoffman, a Beneficiary of Expanded Access (aka: Compassionate Use)
WATCH: Learning about Prescription Assistance from Pharmaceutical Companies with Dr. Joe Germino (Bayer Corporation)
Together we will… FUND A CURE!
June-September
Thank you for taking the #RFAVirtualChallenge! When attendees signed up for the Weekend, they automatically received an email to launch their own online fundraising pages. Then they chose their RFA Challenges!
Sunday, September 26th
RFA Virtual Challenge Ceremony
The finale of the Virtual Weekend and our summer-long fundraising extravaganza! Awards were given, patients and team Challenges were spotlighted, and we celebrated our community in the uplifting spirit of RFA.
Event Sponsor
The DTRF Together We Will Virtual Weekend included the same events our community knows and loves, with a few big changes that made the entire experience accessible for anyone, anywhere with an internet connection. We thank you for putting on your virtual fundraising hat this summer!
The 2020 DTRF Together We Will Virtual Weekend
Together We Will… CONNECT
Friday, September 25th
DTRF Virtual Community Networking Event (via Zoom)
This one hour structured networking event was a great opportunity for patients and caregivers to see and hear each other live.
Together We Will… EMPOWER OURSELVES
Saturday, September 26th
Two DTRF Patient Meeting Webinars (Watch webinar below)
Patients and caregivers were invited to join us for TWO one-hour back-to-back webinars. They learned from our panelists and participated in the Q&As. Both of these one hour webinars featured presentations on key topics relating to desmoid tumor patients.
Patient Meeting Webinar #1: Desmoid Tumors 101 (Watch webinar below)
Read transcript for Webinar #1
Featured topics and Times:
4:00- 38:03 Collaborations with patient advocacy groups with Dr. Mrinal Gounder, Memorial Sloan Kettering Cancer Center (Scientific Director, DTRF)
38:36- 47:36 An overview of desmoid tumors with Dr. Breelyn A. Wilky, University of Colorado
48:40- 58:28 Pediatrics with Dr. Aaron Weiss, Maine Medical Center (Chair, DTRF Medical Advisory Board)
58:52- 1:07:35 Pregnancy with Dr. Chandrajit Raut, Brigham and Women’s Hospital and Dana-Farber Cancer Institute
1:07:35- 1:17:16 Q&A Session
Patient Meeting Webinar #2: Therapies and Clinical Trials for Desmoid Tumors (Watch webinar below)
Read transcript for Webinar #2
Featured Topics and Times:
2:30- 17:13 High Intensity Focused Ultrasound (HiFU) with Dr. Matthew Bucknor, University of California- San Francisco
18:01- 32:25 Intra-arterial doxorubicin drug-eluting embolization (DEE) with Dr. Eldad Elnekave, Rabin Medical Center
32:58- 49:40 Nirogacestat Phase 3 Trial with Dr. L. Mary Smith, SpringWorks Therapeutics
49:55- 1:01:27 Tegavivint Phase 2a Trial with Dr. Casey Cunningham, Iterion Therapeutics
Together we will… FUND A CURE!
July-September
Thank you for taking the #RFAVirtualChallenge! When attendees signed up for the Weekend, they automatically received an email to launch their own online fundraising pages. Then they chose their RFA Challenges!
Sunday, September 27th
RFA Virtual Challenge Ceremony (Watch here!)
The finale of the Virtual Weekend and our summer-long fundraising extravaganza! Awards were given, patients and team Challenges were spotlighted, and we celebrated our community in the uplifting spirit of RFA.
Learn more about DTRF’s 15 years of accomplishments here!
Event Sponsor
PATIENT MEETING ON SEPTEMBER 21, 2019
The DTRF Annual Patient Meeting in Philadelphia took place on Saturday, September 21, 2019 at the Doubletree Hotel- Philadelphia Center City.
Our 2019 Patient Meeting distinguished speakers included:
Robert Benjamin, MD, Clinical Professor, Sarcoma, The University of Texas- MD Anderson Cancer Center, “Overview of desmoid tumors.”
Jesse Boehm, PhD, Scientific Director of the Cancer Dependency Map, The Broad Institute of MIT and Harvard, “Using genome-scale CRISPR screening to create a Desmoid Tumor Dependency Map.”
Casey Cunningham, MD, Chief Medical Officer, Iterion Pharmaceuticals, “Update on the recent launch of Phase I trial of Tegavivint.”
Joe Erickson, Desmoid Tumor Patient.
Joseph Erinjeri, MD, PhD, Interventional Radiologist, Memorial Sloan Kettering Cancer Center, “Cryoablation as a desmoid tumor treatment.”
Bernd Kasper, MD, PhD, Professor, Interdisciplinary Tumor Center, Sarcoma Unit, Mannheim University Medical Center, “The management of desmoid tumors: a joint global evidence-based consensus guideline approach for adult and pediatric patients.”
Alexander Lazar, MD, PhD, Director, Department of Pathology, The University of Texas- MD Anderson Cancer Center, “The pathology of desmoid tumors.”
Raphael Pollock, MD, PhD, FACS, Director, The Ohio State University Comprehensive Cancer Center, “The S45F Desmoid Story: Worth revisiting?”
Mary Smith, PhD, Senior Vice President of Clinical Research & Development, SpringWorks Therapeutics, “Discussion of the phase 3 study design and brief update.”
Kim van der Zande, Co-Founder, Contactgroup Desmoid and Christina Baumgarten, Co-Founder, Sarcoma Patients EuroNet (SPAEN) and Founder, sos-desmoid e.V. Germany, “International patient advocacy collaboration.”
Aaron Weiss, DO, Associate Professor of Pediatrics, Maine Medical Center, “The tumor board: A behind-the-scenes look.”
Breelyn A. Wilky, MD, Associate Professor, University of Colorado Anschutz Medical Campus and Martin McCarter, MD, Professor of Surgery, Surgical Oncology, University of Colorado Anschutz Medical Campus, “If in doubt, should we cut it out? Unique challenges of intra-abdominal desmoid tumors.”
Jeanne Whiting, President and Co-Founder, DTRF.
PATIENT MEETING ON SEPTEMBER 22, 2018
This September, we hosted a weekend of connecting and learning! This year’s Patient Meeting was held on Saturday, September 22nd. Registration will begin at 12pm, and the meeting will end around 5pm with mingling until 6pm. Running for Answers took place the following day, on Sunday, September 23rd.
View Patient Meeting photos photos courtesy of Altoonian Photography.
Our distinguished speakers were:
Casey Cunningham, MD, Chief Medical Officer, Beta Cat Pharmaceuticals, “Phase I study to evaluate safety of Tegavivint in subjects with progressive desmoid tumors.”
Benjamin Alman, MD, Professor and Chair, Department of Orthopedic Surgery, Duke University, “What we can do together in research.”
Remarks by David Croitoru, Desmoid tumor patient and advocate.
Mrinal Gounder, MD, Assistant Professor and Medical Oncologist, Principal Investigator of phase III trial of sorafenib, Memorial Sloan Kettering Cancer Center, “Phase III, randomized, double blind, placebo-controlled trial of sorafenib in desmoid tumors.”
Antoine Italiano, MD, PhD, Medical oncologist and Head of Early Phase Trials and Sarcoma Units, Institut Bergonié, France, “Pazopanib versus IV methotrexate/vinblastine in adult patients with progressive desmoid tumors.”
Carol Kessler, MD, MDiv, Child, Adolescent & Adult Psychiatrist, “Desmoid tumors: The story of a rare disease as told by its sufferers.”
Robert Lefkowitz, MD, Associate Professor, Radiology, Weill Cornell Medical College/Memorial Sloan-Kettering Cancer Center, “MR Imaging in desmoid tumors.”
Karun Sharma, MD, PhD, FSIR, Director, Interventional Radiology, Principal Investigator, Bioengineering Initiative, SZI, Children’s National Medical Center, “Non-invastive and minimally-invasive image-guided treatment options for desmoid tumors: MR-HIFU and needle ablation.”
L. Mary Smith, PhD, Vice President of Clinical Research & Development, SpringWorks Therapeutics, “Brief update on the planned Phase III study for Nirogacestat.”
Aaron Weiss, DO, Associate Professor of Pediatrics, Maine Medical Center, “A new platform for discussion of challenging desmoid tumor cases: DTRF Virtual Tumor Board.”
Breelyn Wilky, MD, Assistant Professor in Hematology/Oncology, University of Miami Sylvester Comprehensive Cancer Center, “FAQs in desmoid tumors.”
PATIENT MEETING ON SEPTEMBER 23, 2017DTRF
welcomed about 200 attendees to our annual Patient Meeting in Philadelphia, September 23, 2017. More physicians than ever attended this year, offering great opportunities for interaction with patients. We were excited to learn of plans for upcoming trials in two potential new desmoid tumor treatments. The first is a Phase III trial in Nirogacestat (“Nye-roe-gay-se-stat”, formerly known as PF-03084014), the gamma-secretase inhibitor that showed promising results in Phase I and II trials in desmoid tumors. The Phase III is being designed for both adult and pediatric patients. The second is a Phase I trial for Tegavivint, a new drug that directly interferes with beta-catenin stabilization that has shown promise in preclinical studies. We will keep you apprised when details about these trials are announced. Other talks informed us in general about the disease and treatments, about how different beta-catenin mutations respond to chemotherapies and about MRI characteristics of tumor progression. We also learned how patients can help contribute to research by participating in the tissue donation program, as well as in the DTRF Desmoid Tumor Patient Registry. Patient participation is key to the success of these important initiatives. We were inspired hearing Rachel Sitta talk about her dedication to helping fund research for a cure and how her commitment to fundraising helps her feel empowered as a patient. Prior to the Patient Meeting, an optional morning program called Healing U. was held. This was an independently-run 2-hour program for patients and caregivers that focused on supporting the body through desmoid treatments via holistic wellness and nutrition. Check out our official 2017 Patient Meeting pictures here, courtesy of event sponsor Laura A. Mikowychok Design & Media, LLC. Our list of distinguished panel of speakers included:
- R. Lor Randall, MD, FACS, Director of Sarcoma Services, Huntsman Cancer Institute, University of Utah, “Desmoid tumors: the nonmalignant malignancy.” Presentation here.
- Victor M. Villalobos, MD, PhD, Assistant Professor of Medicine, Director, Sarcoma Medical Oncology, University of Colorado – Denver, “Desmoid tumor trial using a gamma secretase inhibitor PF-03084014.” Presentation here.
- Lara Sullivan, MD, MBA, “Update on clinical trial for PF-03084014 GSI compound.”
- Benjamin Alman, MD, Professor and Chair, Department of Orthopedic Surgery, Duke University, “Collaboration for a Cure: what we’ve learned so far.” Presentation here.
- Jonathan Northrup, CEO, and Casey Cunningham, CMO, Beta Cat Pharmaceuticals, “Upcoming trial of Tegavivant (BC2059) in desmoid tumors.” Presentation here.
Beta Cat Pharmaceuticals will speak about the upcoming trial of Tegavivint, a new drug targeting desmoid malignancies. Tegavivint is the first drug that directly interferes with bbeta-cateninstabilization. Targeting beta catenin in this way may hold promise for desmoid sufferers, as the science that has evolved shows that desmoid tumors are due to mutations in the beta catenin gene, CTNNB1, which cause improper degradation of beta catenin. Tegavivint has shown promise in directly, specifically and potently reversing this condition in preclinical studies and is planned for early clinical study at the end of this year.
- Kelly Mercier, PhD, Research Scientist in Metabolomics, RTI International, “The DTRF Desmoid Tumor Patient Registry.” Presentation here.
- Michael Cassidy, MD, Assistant Professor of Surgery, Boston University School of Medicine, “MRI characteristic predictive of progression.” Presentation here.
- Rachel Sitta, Patient advocate.
- Breelyn Wilky, MD, Assistant Professor in Hematology/Oncology, University of Miami Sylvester Comprehensive Cancer Center, “Mutation phenotypes and their responses to chemotherapy.”
- Lauren Peters, RD, CSO, LDN, Fox Chase Cancer Center & Jeanes Hospital, “Nourished: Is Your Food Fueling You?”
- Barbara Van Hare, Director of Foundation Partnerships, The Rare Cancer Research Foundation, “The importance of tissue donation and Pattern.org.” Presentation here.
- Bernd Kasper, MD, PhD, Professor, Mannheim University Medical Center, Interdisciplinary Tumor Center, Sarcoma Unit, “Update on the Management of Sporadic Desmoid-type Fibromatosis: A European Consensus Initiative between Sarcoma PAtients EuroNet (SPAEN) and EORTC/Soft Tissue and Bone Sarcoma Group (STBSG).” Presentation here.
Event photos provided by
PATIENT MEETING ON SEPTEMBER 24, 2016
Our 2016 Annual Patient Meeting took place on Saturday, September 24th in Philadelphia, PA. Approximately 200 patients and caregivers joined us from 26 U.S. states, Canada, the United Kingdom and Ecuador. Prior to the meeting, patients and caregivers were welcomed by community members and invited to wear stickers designating tumor location which led to conversations and connecting. They shared their journeys by participating in the Numbers Project, an opportunity to share their journey with the world. During the meeting, experts presented on their topics, and allowed for questions from the audience. DeAnn Sorenson and Sherrie Gould were recognized for administering The Desmoidian and fostering online connections between those in the community. Meeting breaks allowed for one-on-one conversations with doctors and refreshments. View event photos here.
Our list of distinguished panel of speakers included:
- Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University, “Collaboration for a Cure: what we’ve learned so far.” Slide presentation here. Video of presentation here.
- Kelly Mercier, PhD, Research Scientist in Metabolomics, RTI International, “Natural History Study and DTRF Patient Registry.” Slide presentation here. Video of presentation here.
- Mrinal Gounder, MD, Assistant Professor and Medical Oncologist, Memorial Sloan Kettering Cancer Center; Jean Paty, PhD, Principal, and LeAnne Maddux, MA, Consultant, Quintiles Advisory Services, “Data gleaned from development of a PRO tool in desmoid tumors.”
- Lara Sullivan, MD, MBA, Vice President, Pfizer CURES, Pfizer Medical, Pfizer Inc. Topic: “Learn about update on clinical trials on Pfizer compound/a potential new treatment.”
- Raphael E. Pollock, MD, PhD, Professor of Surgery; Director, Division of Surgical Oncology, Ohio State University Comprehensive Cancer Center. Topic: “Understanding the S45F and T41A mutations in desmoid tumors. What is their significance?” Slide presentation here. Video of presentation here.
- Kris Vleminckx, PhD, Professor, Department of Molecular Biomedical Research Unit of Developmental Biology VIB, Ghent University. Topic: “Fishing for New Therapeutic Targets in the Frog Pond.” Slide presentation here.
- Geraldine O’Sullivan Coyne, MD, PhD, Staff Clinician (VP), Investigational Drug Branch, NCI- NIH. Topic: “NCI’s Phase II trial of PF-03084014 in adults with desmoid tumors/aggressive fibromatosis.”
- Sunil Sharma, MD, Division Chief, Medical Oncology at University of Utah School of Medicine, Expert in Oncology Drug Development. Topic: “New Approach to Inhibiting Beta- Catenin.” Slide presentation here. Video of presentation here.
- Raffi Avedian, MD, Assistant Professor of Orthopedic Surgery at The Stanford University Medical Center. Topic: “Magnetic resonance guided high intensity focused ultrasound for the treatment of desmoid tumors.” Slide presentation here. Video of presentation here.
- Integrative Health Panel: Ian Bier, ND, PhD, LAc, FABNO, Human Nature Natural Health. Topic: “Naturopathic Oncology: What is it, and how can it help?” Presentation here. Darrin Richman, RPh, CRMT, Fox Chase Cancer Center. Topic: “Reiki: A Caring Touch.” Secili DeStefano, PT, DPT, OCS, Bodies in Motion Physical Therapy. Topic: “Optimizing Movement to Improve the Human Experience.” Presentation here.
PATIENT MEETING ON OCTOBER 17, 2015
Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University, “Collaboration for a Cure: What We’ve Learned So Far.” Dr. Alman provided updates on Collaboration for a Cure, where 5 promising drugs will continue to be tested.
Dr. Alman is an orthopaedic clinician-scientist, whose research focuses on understanding role of developmentally important processes in pathologic and reparative process involving the musculoskeletal system. The long-term goal of his work is to use this knowledge to identify improved therapeutic approaches to orthopaedic disorders. He makes extensive use of genetically modified mice to model human disease, and has used this approach to identify new drug therapies for musculoskeletal tumors and to improve the repair process in cartilage, skin, and bone. He also works on cellular heterogeneity in sarcomas, and has identified a subpopulation of tumor initiating cells in musculoskeletal tumors. In this work, he also has identified specific cell populations that are responsible for joint and bone development. He has was recently recruited from the University of Toronto to Duke University to chair the department of orthopaedics, which was established in 2010, and includes a large musculoskeletal research component. He has half his time protected for his research work. Dr. Alman is the Principal Investigator in the DTRF-funded collaborative project, “Collaboration for a Cure: Identifying new therapeutic targets for desmoid tumors.”
Aimee Crago, MD, PhD, Assisting Attending Surgeon, Memorial Sloan Kettering Cancer Center, “Personalizing Management of Desmoid Tumors”.
Dr. Crago is a surgeon-scientist at Memorial Sloan-Kettering Cancer Center where she serves as an Assistant Attending. As a member of the institution’s Sarcoma Disease Management Team, she is an active participant in the care of patients with desmoid fibromatosis and coordinates clinical research and basic science efforts examining the causes of desmoid formation and progression. Her research has been funded by the American Society of Clinical Oncology, the American College of Surgeons, the Kristen Ann Carr Fund, Cycle for Survival and the MSKCC SPORE in soft tissue sarcoma. Most recently she has worked to create a nomogram that uses clinical characteristics to predict outcome after surgical resection of desmoid tumors, and she is actively engaged in work characterizing genomic changes that mediate formation of desmoid tumors.
Jean Paty, PhD, Practice Lead/Principle, Advisory Services, Quintiles, Panel Discussion: Patient-Reported Outcomes
Jean is an acknowledged leader in the effective strategies and practices of capturing patient perspective data for use in the clinical development and commercial success of new medical products. He has not only published extensively in the areas of Patient Reported Outcomes (PRO) and electronic PRO (ePRO), but also on the regulatory guidance for development and implementation of ePRO. He has worked closely with the international industry and regulatory agencies on ePRO best practices. Dr. Paty’s work is well-referenced in a wide variety of peer-reviewed journals and in numerous conferences and events, where he has presented his findings on the scientific, clinical, and regulatory implications of Clinical Outcome Assessment (COA) data collection in clinical trials. Jean has a B.S. in Psychology from the University of Toronto and an M.S. and Ph.D. in Psychology from the University of Pittsburgh. Profile here.
Patient Meeting presentation here.
Amylou Dueck, PhD, Head of Biostatistics in Health Sciences Research Division, Mayo Clinic, Panel Discussion: Patient-Reported Outcomes
Amylou C. Dueck, Ph.D., joined Mayo Clinic in Rochester, Minn., as a lead statistician in 2005 after receiving a doctoral degree in statistics from Arizona State University. In May 2007, she transferred to the Mayo Clinic campus in Arizona, where she is the current head of the Section of Biostatistics in the Division of Health Sciences Research. Dr. Dueck’s primary role at Mayo Clinic is designing and analyzing clinical trials in hematologic malignancies, though she additionally collaborates with investigators in neurology and other departments on studies of various designs. Profile here.
Bernd Kasper, MD, PhD, Mannheim University Medical Center, Interdisciplinary Tumor Center, Sarcoma Unit, “The European Experience”.
Prof. Bernd Kasper studied Medicine at the University of Heidelberg. In 2001, he finalised his thesis at the German Cancer Research Centre (DKFZ) dealing with new treatment strategies for chronic myelogenous leukaemia patients using the tyrosine kinase inhibitor imatinib. To deepen his training, he stayed in London (Imperial College School of Medicine, Hammersmith Hospital, Department of Haematology) and Brussels (Jules Bordet Institute, Medical Oncology Clinic). In 2007 and 2008, he specialized in Internal Medicine and Medical Haematology/Oncology at the Department of Internal Medicine V at the University of Heidelberg. Currently, he works together with Prof. Peter Hohenberger at the Sarcoma Unit of the Interdisciplinary Tumor Center Mannheim (ITM) at the Mannheim University Medical Center, University of Heidelberg. Since 2011, he is the Leading Physician and coordinator of the ITM. Since 2002, his special interest lies in the treatment of patients with bone and soft tissue sarcomas including GIST and desmoids. He is head of the study center of the German Interdisciplinary Sarcoma Group (GISG) and is active in national and international study groups (AIO, EORTC).
Patient Meeting presentation here.
Robert Lefkowitz, MD, Associate Professor, Radiology, Weill Cornell Medical College/ Memorial Sloan-Kettering Cancer Center, “MR Imaging of Desmoid Tumors”.
Dr. Lefkowitz is a radiologist specializing 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.
Vinay Puttanniah, MD, Director of Regional Anesthesia, Memorial Sloan Kettering Cancer Center, “Pain Management”.
Dr. Puttaniah is a board-certified anesthesiologist with additional expertise and training in pain medicine. As a member of both the Anesthesiology Service and the Pain Service in the Department of Anesthesiology and Critical Care Medicine, his clinical work involves delivering anesthesia as well as treating postoperative pain. He also treats cancer pain using medications, nerve blocks, intrathecal drug delivery systems, radiofrequency techniques, and neurolytic blocks. Profile here.
Kishore Iyer, MBBS, FRCS (Eng), FACS, Professor of Surgery and Pediatrics. Mount Sinai Medical Center, “Challenging Conventional Limits of Inoperability in Abdominal Desmoids and Sarcomas”.
Kishore Iyer is director of adult and pediatric intestinal transplantation at Mount Sinai Medical Center in New York, surgical director of pediatric liver transplantation and an associate professor of surgery and pediatrics at the Mount Sinai School of Medicine. Dr. Iyer is also director of the transplant surgery fellowship program at Mount Sinai. Dr. Iyer trained in general surgery and pediatric surgery in the UK where he worked with Dr Adrian Bianchi and developed his early interest in short bowel syndrome and the use of intestinal lengthening procedures. He pursued research at the Great Ormond Street Hospital for Sick Children in London, winning the 1996 British Association of Pediatric Surgeons Prize for his pioneering work identifying phytosterols in soy-based lipid emulsions as a potential cause for parenteral nutrition-associated liver disease in patients with intestinal failure. Kishore trained in transplant surgery at Chicago and Omaha, working as a liver and intestinal transplant surgeon at Omaha for almost 4 years. He was responsible for establishing the intestinal rehabilitation program in Omaha, which he directed before moving to Chicago to establish and direct the intestinal transplantation and rehabilitation program at Northwestern University/Children’s Memorial Hospital. His current clinical and research interests are in the areas of surgical management of intestinal failure, intestinal transplant and TPN associated liver disease, as well as complex abdominal tumors at the mesenteric root and portal hypertension surgery. He has published extensively in the areas of intestinal failure and TPN-associated liver disease as well as intestinal and pediatric liver transplantation. Dr. Iyer is a Fellow of the Royal College of Surgeons of England and a Fellow of the American College of Surgeons. He was until recently on the Pediatric Committee of UNOS (United network for Organ Sharing) and a director on the Board of Trustees of the Oley Foundation, a large support group and information resource for patients with intestinal failure.
Patient Meeting presentation here.
PATIENT MEETING ON SEPTEMBER 27, 2014
Joseph Erinjeri, MD, Interventional Radiology, Memorial Sloan-Kettering Cancer Center. Of particular interest for desmoid tumor patients is Dr. Erinjeri’s experience with cryoablation on desmoid tumors.
Profile here.
Chandrajit P. Raut, MD, Director, Surgical Oncology, Sarcoma, Associate Professor of Surgery, Harvard Medical School. Dr. Raut published a paper on “Desmoid fibromatosis and pregnancy: A multi-institutional analysis of recurrence and obstetric risk.”
Article here. Profile here. Patient Meeting Presentation here.
Raphael E. Pollock, MD, PhD, Professor of Surgery; Director, Division of Surgical Oncology, Ohio State University Comprehensive Cancer Center. “Desmoid Overview”
Profile here.
Mrinal Gounder, MD, Assistant Professor and medical oncologist at Memorial Sloan-Kettering Cancer Center. ”A Phase III Study of Sorafenib in Desmoid Tumors: An Update.”
Profile here. Clinical trial presentation here.
PATIENT MEETING ON SEPTEMBER 28, 2013
Mrinal Gounder, MD, Assistant Professor and medical oncologist at Memorial Sloan-Kettering Cancer Center.
Profile here. Patient Meeting presentation here.
Suzanne George, MD, Clinical Director, Center for Sarcoma and Bone Oncology, Dana Farber Cancer Institute; Assistant Professor of Medicine, Harvard Medical School.
Profile here.
Robert G. Maki, MD, PhD, Clinical Director, Professor Medicine, Hematology and Medical Oncology, Professor Orthopaedics, Mount Sinai Hospital.
Profile here.
Raphael E. Pollock, MD, PhD (MD Anderson Cancer Center) – Dr. Pollock is Head of the Division of Surgery, Professor and Chairman of the Department of Surgical Oncology, and Professor of Cancer Biology at The University of Texas M. D. Anderson Cancer Center, Houston, Texas where he also is the incumbent in the Senator A. M. Aiken, Jr. Distinguished Chair.
His clinical and research interests involve the treatment of soft tissue sarcoma. view presentation
Mrinal Gounder, MD (Memorial Sloan-Kettering Cancer Center)
Dina C. Lev, MD (MD Anderson Cancer Center)
Dr. Lev is a DTRF Grant Recipient and is an Assistant Professor of Cancer Biology at the University of Texas, MD Anderson Cancer Center and has made significant progress in the understanding of desmoid tumors. Dr. Lev’s research has involved the role of CTNNB1 45F mutation as a potential molecular predictor of recurrence for desmoid tumors.
James Church, MD (Cleveland Clinic)
Benjamin Alman, MD (University of Toronto)
Dr. Alman is a professor of surgery, a member of two graduate school faculties and a member of two graduate collaborative programs at the University of Toronto. He is a senior scientist in the Research Institute of The Hospital for Sick Children with an appointment in the program in Developmental and Stem Cell Biology. Dr. Alman is also the Vice Chair of Research within the Department of Surgery at the University. view presentation
Andrew Wagner, MD, PhD
Dr. Wagner is a Medical Oncologist at Dana Farber Cancer Institute and an instructor of Medicine at Harvard Medical Center. His interests are with soft tissue sarcoma, bone sarcomas, GIST, and developmental therapeutics. View pressentation.
Richard B. Womer, MD
Dr. Womer is a Professor of Pediatrics at The University of Pennsylvania School of Medicine. His interests include clinical and “translational” research on the diagnosis and treatment of childhood sarcomas. View presentation.
Arthur Staddon, MD
The University of Pennsylvania -Dr. Staddon is a Medical Oncologist and is Director of the Joan Karnell Cancer Center and Director of the Bone or Soft Tissue Sarcoma Program. View presentation.
Joseph Erinjeri, MD, PhD
Kevin Reilly
Thomas Ryan, MD
Our 2010 Patient Symposium, Running for Answers Walk and Brunch was a great success! The Patient Symposium was held at the Loews Philadelphia Hotel on November 13th. Over 75 patient and family members attended the meeting and received valuable information from our distinguished panel of experts. We also had an opportunity to tell our own stories learn from each other. Following the talks patients interacted with the experts and with each other. This has been the highlight of the event for many of our attendees. The Running for Answers 5K Run/ Walk was on November 14th at Fairmont Park. It was an absolutely beautiful fall day! There were over 260 people participating in the Kids Fun Run, 5 Mile Race or 1 Mile Walk. Pat Ciarrocchi from CBS 3 was our MC, kicking off the event. A delicious brunch immediately followed the Running for Answers event at the Marriott Courtyard providing a perfect way to end the wonderful weekend. Read the write up from our Running for Answers sponsor: Quest Diagnostics. Check out pictures of Running for Answers here.
Dr. Benjamin Alman, MD
Dr. Alman is a professor of surgery, a member of two graduate school faculties and a member of two graduate collaborative programs at the University of Toronto. He is a senior scientist in the Research Institute of The Hospital for Sick Children with an appointment in the program in Developmental and Stem Cell Biology. Dr. Alman is also the Vice Chair of Research within the Department of Surgery at the University. He runs an active basic science research program, studying the role of signaling pathways and stem cells in embryonic development, tissue regeneration as well neoplasia in the musculoskeletal system. Dr. Alman spoke about ongoing research in the search for a cure of desmoid tumors. Dr. Alman is a DTRF grant recipient. Presentation
Dr. Andrea Marrari, MD
Dr. Marrari is a medical oncologist from The Istituto NazionaledeiTumori in Milan, Italy and spoke about medical treatments, clinical presentations and prognosis of desmoid tumors. Dr. Marrari is a visiting researcher at the Dana Farber Cancer Institute working in the Center for Sarcoma and Bone Oncology. He has done research demonstrating the activity of sunitinib in a rare sarcoma. He is currently involved in clinical research on sarcoma, with the aim of identifying biological predictive markers of response to conventional chemotherapy and new targeted therapy. He is also conducting extensive molecular characterization on selected histiotypes to identify new potential therapeutic targets. Presentation
Dr. Marcovalerio Melis, MD, F.A.C.S
Dr. Melis is currently Assistant Professor of Surgery at the New York University School of Medicine, Associate Member (Sarcoma and GI Cancer Groups) at he New York University Cancer Institute and Staff Attending Surgeon of the NY Harbor Healthcare System. He has had numerous publications on colorectal and esophageal cancer. Dr. Melis co-authored an important paper about surgical margins in the management of desmoid tumors Presentation
Dr. Stephen Skapek, MD
Dr. Skapek is Associate Professor of Pediatrics , Section of Hematology/Oncology, at the Comer Children’s Hospital at the University of Chicago and spoke about the unique dilemma of treating desmoid tumors in the pediatric population. His research interests include understanding the molecular and genetic mechanisms in the initiation of cell proliferation in the genesis of tumors. Specifically, he is studying tumor formation in and treatment of rhabydomysosarcomas, retinoblastoma, pineoblastoma and aggressive fibromatosis. Dr. Skapek is a DTRF Grant Recipient. Presentation
Raphael E. Pollock, MD, PhD, MD
Dina C. Lev, MD
Richard D. Lackman, MD,
Matt Alsante
Suzanne George, MD
Francis John Hornicek, MD, Ph.D
Benjamin Alman
DTRF’s First Annual Fundraiser and Patient Meeting was a great success! There were over 125 silent auction items sold. There were 30 people in attendance at the Patient Support meeting where Dr. Lev, from MD Anderson Cancer Center, gave an informative talk about current research.
Click here to view our pictures from this special event.
