Running for Answers & Patient Meeting

The DTRF Patient Meeting and Running For Answers 5K Run/ Walk and Kids' Fun Run occur annually in the fall.

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 past events below.

Join the fun! It is a healing and informative weekend. 




2015 Patient Meeting and Running for Answers 5K continue to faciliate learning and connections in the patient community.


2015 Patient Meeting

Approximately 200 patients and caregivers attended our Annual Patient Meeting in Philadelphia, PA. Once again, this was a great opportunity for patients to connect and learn from our expert presenters.

Dana Pounds, a survivor who has battled desmoids in her leg and hip for over 15 years, addressed our crowd during the break and lifted everyone with her story of perseverence. After her talk, she trotted off the stage outfitted in a running blade which she wears since her partial leg amputation.

Musicians Melissa Hirsch and Julie Manfredi provided inspiring musical entertainment prior to a wine reception which ended the day.

One attendee stated, "This is the highlight of my year. The highlight of my year. I am so happy and I'll never miss this again."

Our list of speakers included Dr. Benjamin Alman, Dr. Kishore Iyer, Dr. Aimee Crago, Dr. Vinay Puttanniah, Dr. Robert Lefkowitz, Dr. Amylou Dueck along with staff designing our Patient Reported Outcome tool,  Dr. Jean Paty and Erin Tomaszewski.

Check out our pictures here!


2015 Running for Answers 5K & Kids' Fun Run

We welcomed a change in venue and date for 2015. The race was held at Campbell's Field in Camden, New Jersey, just 10 minutes away from Center City Philadelphia, and the course boasted gorgeous views, weaving through the commercial district and along the riverfront and Ben Franklin Bridge. 

Over 500 runners/ walkers enjoyed the day's events, including a Survivor Loop around the baseball field and our Kids' Fun Run there as well. Race snacks and coffee were provided by Conner Catering and even Finley the Rivershark cheered on our runners as they finished the race.

This fundraiser, in conjunction with our Patient Meeting, raised over $185,000 and this number is still increasing!

Take a look at our pictures at RFA here!




2014 DTRF Patient Meeting and Running for Answers 5K Exceed Fundraising & Attendance Goals!


2014 DTRF Patient Meeting

Roughly 270 patients, family members and supporters gathered for a weekend of information and hope at the 8th annual DTRF Patient Meeting. 

Our list of distinguished speakers included Dr. Joseph Erinjeri, Dr. Chandrajit Raut, Dr. Raphael Pollock, Dr. Mrinal Gounder, Dr. Benjamin Alman, Dr. Aaron Weiss, Dr. Shivaani Kummar and Sean Ryan.

We enjoyed hearing from Casey Sonke and former Philadelphia Eagle Kevin Reilly who shared their desmoid tumor stories and inspired us with their courage, positive outlooks and humor. 

Desmoid tumor survivor Brooke Jacob and pianist Julie Manfredi lifted us with a fun musical medley at the end of the day. A wine reception followed the meeting, allowing for closer connections and the opportunity to ask informal questions to the physicians and researchers. It was an inspiring day for us all as we became better informed and uplifted for our journeys ahead. 

View event pictures here!


2014 Running for Answers 5K Run/ Walk & Kids' Fun Run

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With approximately 800 participants, the 5th Annual Running for Answers 5K (RFA) raised over $200,000 for desmoid tumor research! These funds were hard-earned by scores of patients and families who ran their own peer-to-peer online fundraising campaigns.

Participants enjoyed our 5K "crazy socks" theme and brought their children to enjoy kids' activities and our pirate-themed Fun Run. For the second year in a row, we were joined by Scott O'Neil, CEO of the Philadelphia 76ers. He helped build enthusiasm with his rousing introductory remarks.

A thousand thank you's for our community's support around this event!

Follow us on Facebook here and view pictures from RFA here!



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 & Kids' Fun Run

Patients at RFA 2013 opt

The patient meeting was followed by our 4th annual Running For Answers 5K & Kids' Fun Run, DTRF's largest fundraiser.  About 700 runners joined in the 5K run/ 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