DTRF Past Signature Events

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.

Enjoy pictures from the 2013 DTRF Patient Meeting here!



2013 Running for Answers 5K Run/ Walk Fundraiser

DESMOID Survivors

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 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.

Check out our Running for Answers pictures here!

 


 

2013 Wine Tasting Fundraiser Raises $170,000!

Comedienne and media personality Rosie O'Donnell was the honored guest at our June 5th fundraiser in Piermont, New York. Rosie delighted the crowd of 180 attendees with a stand-up comedy routine. Then she stunned everyone by offering to match all donation proceeds for the event. One by one, enthusiastic donors stood to pledge donations which will go to help fund our Collaboration for a Cure drug screen project. With the match, a total of about $170,000 was raised-- a huge jump-start to our fundraising campaign for this million dollar project.

Rosie shared both the lighter side and the poignant drama of the diagnosis of her wife Michelle's desmoid. "With a rare disease that only about a thousand people get every year in the United States, what were the odds of a celebrity being one of them?", she mused. But she noted that the positive side of this difficult journey is that she can use her celebrity to help raise funds for research for a cure so others will not have to suffer as Michelle has.

Rosie and Michelle graciously stayed another hour to greet people and speak with anyone who wanted to meet them. It was an evening of delicious food, wine and the best of company, as well as great feelings that come from helping a good cause.

Check out the rest of our pictures here!

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2012 Patient Symposium, Running for Answers 5K & Brunch


2012 DTRF Patient Meeting

On October 20, 2012, 160 patients, family members and friends attended our 6th Annual Patient Meeting at the Philadelphia Marriott Courtyard Downtown.  Our distinguished speakers were Raphael E. Pollock, MD, PhD (MD Anderson Cancer Center), Mrinal Gounder, MD (Memorial Sloan-Kettering Cancer Center), Dina C. Lev, MD (MD Anderson Cancer Center), James Church, MD (Cleveland Clinic) and Benjamin Alman, MD (University of Toronto). 

Subjects discussed included tumor biology and current treatments, the ongoing Sorafanib (Nexavar) demoid study, the activity of Nefapam in desmoid tumors, beta catenin mutations in desmoids and treatment of desmoids in FAP.

Kevin Reilly, a former NFL player whose career with the Philadelphia Eagles was cut short by an arm and shoulder amputation from a desmoid tumor, gave a talk inspiring us to move ahead with courage.

And definite highlights were two speeches given by celebrity Rosie O’Donnell at both the Patient Meeting and Running for Answers.  With her characteristic humor she gave a lighter perspective to our plight as desmoid patients and hope for the future through raising awareness and funding for research.

Dr. Mehmet Oz of the famed Dr. Oz show sent a special video to play at the meeting where he expressed his support of DTRF and his desire to build awareness for the need to support desmoid tumor research.

The patient breakout sessions allowed for closer connections and commiserating as we could share with each other and also ask questions of the physicians and researchers.  It was an informative and inspiring day for all as we were renewed in our quest for a cure and uplifted for our journeys ahead.


Check out pictures from this special day here!



2012 Running for Answers 5K Run/ Walk Fundraiser


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 The patient symposium was followed by our 3rd annual Philadelphia Running For Answers Race/walk.  More than 700 runners joined in the 5K race/walk and Kids Fun Run through Fairmont Park on a beautiful, sunny fall day.

We raised over $250,000 for desmoid tumor research!! The money was hard-earned by hundreds of patients and families who ran their own fundraising campaigns through their firstgiving pages.  And Rosie matched $52,000 of donations received by her wife, Michelle Rounds, on her fundraising page!

 Kevin Reilly built enthusiasm for the event with several PSA’s on local tv and radio stations.  And he even brought along the Philadelphia Eagles Cheerleaders!  Pat Ciarrocchi

of CBS-3 news and Talk Philly interviewed Rosie and generated local publicity. Check out Pat's interview  and Kevin's PSA !

This incredible weekend always leaves us renewed and invigorated in our mission to fund research for a cure! Thanks to everyone who participated and donated. Check out the details from our Patient Meetings and Running for Answers events in 2010 and 2011! Our race website at www.runningforanswers.com .


Review Presentations from Dr. Alman and Dr. Pollock.

 


 2012 Wine tasting in Piermont, NY

The DTRF Wine Tasting on May 17th was a huge success! Delicious wines, good food and company were experienced by the 150 attendees. View pictures of the event here.

Meredith Vieira and Kevin Reilly were special guests at DTRF's spring fundraiser.

 

 

 


2011 Running for Answers, Patient Symposium & Brunch

Check out more information and pictures from the Patient Symposium and Running For Answers.


2011 Wine tasting in Piermont, NY on May 26

 

Check out more pictures of Wine Tasting here.


2010 Running for Answers, Patient Symposium & Brunch

Information and pictures of Patient Symposium, Running For Answers and Brunch here.


2010 No Gala Gala

See Benefactors Wall of those supporting the No Gala Gala.


DTRF's Annual Dinner Fundraisers are a success!

Our patient symposiums and dinners have been a huge success! I think everyone would agree that the patient meetings not only gave everyone the opportunity to exchange experiences but was extremely informative. The dinner events that followed helped raise money for continued research.

Information and pictures about Fundraisers from years 2009  2008   2007  2006