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 2014 events below.

RFA has grown to about 800 participants, and we anticipate even more in 2015. Join the fun! It is a healing and informative weekend. Register with DTRF to receive updates, and stay tuned for our 2015 date announcement!

 


 

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 www.dtrf.org).  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 www.runningforanswers.com.