Running for Answers & Patient Meeting

The DTRF Patient Meeting and Running For Answers 5K Run/ Walk and Kids' Fun Run occur annually on the 4th weekend in September.

Running for Answers, founded in 2009, is the annual DTRF signature fundraising event. Held in Philadelphia, Pennsylvania, on the 4th Sunday in September, this special event takes place the day following our annual Patient Meeting. This allows patients, family members and friends to enjoy a full weekend in beautiful Philadelphia, spending a day of informative lectures and roundtables on desmoid tumors, followed by a race/ walk the next day. Participants work to raise donations through their Firstgiving pages prior to the race. Read the report of the 2013 race below.

We have grown to about 700 participants, and anticipate even more in 2014. Join the fun! It is a healing and informative weekend. Register with DTRF to receive updates, and mark your calendars for our 2014 events, taking place on Saturday, September 27 and Sunday, September 28.



2014 Patient Meeting

Save the Date: September 27, 2014

Join us and other desmoid tumor patients and their families for a weekend of new friends, new information and hope. The DTRF annual Patient Meetingwill be held on Saturday, September 27 from 12:30-6:00 pm at the Sheraton Downtown Philadelphia, 201 N 17th St, Philadelphia, PA 19103. A block of rooms has been reserved at a discounted rate of $140 and is available on a first-come basis. Reserve a room here.

Our 5K Running for Answers will be held the next morning at Philadelphia’s Fairmont Park starting at the Please Touch Museum, followed by a brunch at the Sheraton.

(Registration for the Patient Meeting, run and brunch is free for individuals who raise at least $300 for research. It’s easier than you think! You’d be amazed at how supportive friends and family can be for your individual fundraising campaign.) 

Visit to register and learn more about the weekend's events!

Our current list of distinguished panel of speakers includes: 

  • Joseph Erinjeri, MD, Intervential 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.
  • Raphael E. Pollock, MD, PhD, Professor of Surgery; Director, Division of Surgical Oncology, Ohio State University Comprehensive Cancer Center. Dr. Pollock is Principal Investigator of the DTRF-funded study "A rational search for novel anti-drug therapies." Profile here.
  • Mrinal Gounder, MD, Assistant Professor and medical oncologist at Memorial Sloan-Kettering Cancer Center. Dr. Gounder is the Principal Investigator in a trial partially funded by DTRF studying Nexavar/Sorafinib in desmoid tumors. Profile here.
  • Benjamin Alman, MD, Department Chair, Orthopedic Surgery, Duke University. Dr. Alman is the Principal Investigator in the DTRF-funded collaborative project, “Collaboration for a Cure: Identifyng new therapeutic targets for for desmoid tumors.” Profile here.
  • Aaron Weiss, DO, Maine Medical Center, Maine Children’s Cancer Program, Pediatric Hematology and Oncology.   Dr. Weiss is the Principal Investigator of the DTRF-funded study, “A Pilot Study Evaluating the Use of mTor Inhibitor Sirolimus in Children and Young Adults.” Profile here.
  • Shivaani Kummar, MD, Head, Early Clinical Trials Development, National Cancer Institute. Dr. Kummar is the Principal Investigator of a Phase II trial of a gamma-secretase inhibitor. Profile here.
  • Sean P. Ryan. Desmoid tumor patient and current medical student and desmoid tumor researcher at Ohio State. Member of the Board of the Ryan Foundation.



    2013 DTRF Patient Meeting and Running for Answers 5K Fundraiser Break all Records!

    Pictures from the 2013 DTRF Patient Meeting are here; our 2013 Running for Answers for pictures are here!

    2013 DTRF Patient Meeting

    Roughly 200 patients and their families and supporters gathered for a weekend of new information, new connections and hope at the 7th annual DTRF Patient Meeting held on Saturday, September 28 from 1:00-6:00 pm at the Sheraton Downtown Philadelphia.
    Our distinguished speakers included Aimee Crago, MD, PhD (Memorial Sloan-Kettering Cancer Center); Tony Ferlenda (CEO, Sarcoma Foundation of America); Suzanne George, MD (Dana Farber Cancer Institute); Mrinal Gounder, MD (Memorial Sloan-Kettering Cancer Center); Robert G. Maki, MD, PhD (Mount Sinai Hospital); Matt van de Rijn, MD, PhD (Stanford University Medical Center).
    Subjects discussed included:  important overviews of current and promising new systemic treatments for desmoid tumors; surgery vs. wait-and-observe; the development of a prognostic nomogram for prediction of tumor recurrence; the continuing search to find genomic predictors of tumor behaviors; new technology that allows researchers to use paraffin-preserved tissues instead of needing frozen tissues (contact DTRF to donate yours!); information about the Nexavar trial being conducted in 100 hospitals nationwide; and, information about two desmoid clinical trials run by the National Cancer Institute’s rare tumor iniative.
    We also loved hearing from Matt Zechmann and former Philadelphia Eagle Kevin Reilly who shared their desmoid tumor stories and inspired us with their courage, positive outlooks, and humor.  
    Broadway entertainment from Tony-nominated singer, Orfeh, and pianist, Steven Jamail, brought a bright mood at the end of the day.  A wine and snacks hour allowed for closer connections and commiserating as we could share with each other and also ask informal questions of the physicians and researchers.  It was an inspiring day for all as we became better informed and uplifted for our journeys ahead.

    2013 Running for Answers 5K Run/ Walk Fundraiser

    Patients at RFA 2013 opt

    The patient symposium was followed by our 4th annual Running For Answers.  About 700 runners joined in the 5K race/walk and the Kids Fun Run through Fairmont Park on a beautiful sunny day.
    Scott O’Neil, new CEO of the Philadelphia 76ers built enthusiasm with his rousing introductory remarks.  Rosie O’Donnell, whose wife Michelle was diagnosed with a desmoid tumor over a year ago, contributed her characteristic humor to lift our spirits and inspire us on.  Former Philadelphia Eagle, Kevin Reilly, ran several pre-race PSA’s on local tv and radio stations.  Interviews by local news media brought publicity and increased awareness.
    In our highest-grossing fundraising effort ever, the event raised over $370,000 for desmoid tumor research!!  This met our goal of funding the first year of the Collaboration for a Cure research project that will start this fall (more info at  The funds were hard-earned by scores of patients and families who ran their own fundraising campaigns through their Firstgiving pages.  You all came through when we needed you most to get this critical project underway!  A thousand thank you’s!
    This incredible weekend always leaves us renewed and invigorated in our mission to fund research and keep moving toward new treatments and an eventual cure.  Thanks to everyone who donated and participated in any way! Our race website is