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 reports of the previous events below. RFA has grown to about 600 participants, and we anticipate even more in 2017. Join the fun! It is a healing and informative weekend. Stay tuned for more information about our 2018 events here.
2018 Patient Meeting
We were excited to get updates on trials in two potential new desmoid tumor treatments: a Phase III trial in the GSI inhibitor Nirogacestat (a gamma secretase inhibitor) by SpringWorks planned forearly 2019, and a Phase I study of Tegavivint (a beta catenin inhibitor) by Beta Cat Pharmaceuticals that has already begun dosing patients. We also had reports on past desmoid tumor trials in sorafenib and pazopanib that showed encouraging results for patients.
Presentations also enlightened us about minimally invasive MR-guided HIFU and needle ablation treatments in children, and about an important new resource for physicians handling difficult cases called the DTRF Virtual Tumor Board. Other talks informed us in general about the disease and treatments and answered frequently asked questions (FAQ) in desmoids. We also learned more about how to understand MRI imaging of desmoids, and how patients can deal with the psychological impacts of desmoid tumors.
One presentation highlighted how much progress we’ve seen with researchers around the world collaborating as teams, and patients working together with researchers. For example, patients can help contribute to research by participating in the tissue donation program (by consenting prior to surgery at Pattern.org), as well as in the DTRF Desmoid Tumor Patient Registry (at dtrf.iamrare.org). Patient participation is key to the success of these important initiatives.
We were inspired hearing patients Kevin Reilly and David Croitoru talk about their patient experiences and their dedication to helping fund research for a cure.
Special thanks go to Altoonian Photography for event photos, Bryan Schaefer for videography, and SpringWorks Therapeutics for a generous Gold Sponsorship of the meeting.
2018 Running for Answers 5K & Kids’ Fun Run
Approximately 400 race participants joined us with over 35 teams. Largest teams included Team Rachel, Kate’s Krewe, the Unicorn Squad, Robin’s Runners, and Team Margie which had teammates from Ecuador once again!
Opening ceremonies included our notable survivor photo and super fast, superhero-themed Kids’ Fun Run! Race attendees lined the short out and back course cheering as little feet dashed. It was a great way to get our day started!
Race day speakers included Christina Kosyla, who expressed her gratitude for the community and for DTRF and reminded us that “we are the answers”. Kevin Reilly echoed her sentiments reminding us how far we’ve come in so little time. As always, this hometown hero finished by leading us in an EAGLES cheer.
Chris Allegra warmed us up with some pre-race Zumba, then we were off to do our 5K!
Upon returning, race attendees were encouraged to enjoy free cheesesteaks and ice cream. Yogi Jill Cummings welcomed runners to join her for a post-race stretch.
Steve Portnoy managed our award ceremony which recognizes community members that we have lost to desmoid tumors, and we celebrate our award winners who continue to drive us toward a cure by creating awareness and raising funds for research.
Free cheesesteaks and ice cream cones along with other race snacks and coffee were provided by our event sponsor, Conner Catering. Other generous sponsors included Fox Chase Cancer Center, PHILADELPHIA RUNNER, 6abc, ADH Communications and Philadelphia Parks & Recreation.
Check out our photos courtesy of sponsor Altoonian Photgraphy.
2017 Patient Meeting
DTRF 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.
A list of our speakers, along with their presentations can be found here.
Check out our official 2017 Patient Meeting pictures here, courtesy of event sponsor Laura A. Mikowychok Design & Media, LLC.
2017 Running for Answers 5K & Kids’ Fun Run
2016 Patient Meeting
This year, DTRF welcomed approximately 200 attendees to our Patient Meeting in Philadelphia on Saturday, September 24th.
Once again, patients and caregivers were welcomed by other community members upon arrival. The day started with a free self-advocacy workshop to help patients navigate their medical journeys.
During the afternoon presentations, participants learned of two potential upcoming trials (a Phase III as well as a Phase I), a new treatment option (HIFU), new animal models, a better understanding of gene mutations in desmoid tumors, the new DTRF patient registry, the almost-complete Patient Reported Outcome tool, and a hit from our Collaboration for a Cure project.
We recognized DeAnn Sorenson and Sherrie Gould for their leadership and peer advocacy efforts. The afternoon ended with an Integrative Health Panel addressing physical therapy and wellness.
Check out our pictures here!
2016 Running for Answers 5K & Kids’ Fun Run
After spending 2015 in Camden, NJ, Running for Answers was back in Philly for 2016. The race was held at the Please Touch Museum in Philadelphia and weaved through Fairmount Park on September 25, a gorgeous fall day. This event is an opportunity for patients to gather their friends and family to raise funds and rally around our shared goal: a cure for desmoid tumors.
Over 500 runners/ walkers joined us for the 5K and Kids’ Fun Run. Over 35 teams were with us on race day, along with Team Margie, who joined us from Ecuador!
Opening ceremonies started with DeAnn Sorenson and Dana Pounds addressing the crowd and sharing their journeys of hope in the face of desmoid tumors. Both Maddalena Casabianca Reade and Kevin Reilly managed our award ceremonies, with the help of RFA Founder Sera Snyder. The morning ended with a handful of teams coming together for a special moment of impromptu zumba. Free cheesesteaks and ice cream cones were provided to participants; race snacks and coffee were provided by our event sponsor, Conner Catering. This fundraiser, in conjunction with our Patient Meeting, raised over $137K!
Check out our photos here!
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! Photos here!
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
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 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. Check out pictures from the 2013 DTRF Patient Meeting here. 2013 Running for Answers 5K Run/ Walk & Kids’ Fun Run
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. View 2013 Running for Answers pictures here!
2012 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 & Kids’ Fun Run 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 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.
2011 DTRF Patient Meeting On October 22, 2011, 120 patients, family members and friends attended our 5th Annual Patient Symposium at the Philadelphia Marriott Courtyard Downtown. Our distinguished speakers were Andrew J. Wagner, MD, PhD from the Dana-Farber Cancer Institute, Arthur P. Staddon, MD from the Joan Karnell Cancer Center at Pennsylvania Hospital, Richard B. Womer, MD from the Children’s Hospital of Pennsylvania, and Joseph P. Erinjeri, MD, PhD from the Memorial Sloan-Kettering Soft Tissue Sarcoma Disease Management team. The patient meeting was followed by our second annual Philadelphia Running For Answers Race/walk. An incredible 500 runners joined in the 5K race/walk and kids fun run through Fairmont Park on a beautiful crisp, sunny fall day. Subjects discussed included tumor biology and current treatments, desmoid tumors and pediatrics, ablation therapies, and the promise shown for desmoid treatment in ongoing Sorafanib (Nexavar) and Hydroxyurea studies. We had the honor to acknowledge Dr. Thomas Ryan, a benefactor of DTRF who allows us to further research and reach our goals. 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 an inspiring talk on how desmoid patients and their supporters can and must move forward despite obstacles of pain, treatments, surgeries and disability. The meeting left us all better informed and armed with hope for the future through continued research. It is always so moving to meet the attending desmoid tumor patients and hear their stories. It is heartening to hear how DTRF is reaching patients around the world and assisting with critical information and hope to help them navigate their medical journeys. We raised approximately $150,000 for desmoid tumor research!! This year we had extraordinary participation from patients and their families as they initiated individual and team fundraising efforts.There were several teams and individuals that raised over $10,000 each! A few individuals even raisedover $16,000 to help further the cause. Their hearts and hopes were in every dollar raised. This incredible weekend left us renewed and invigorated in our mission to fund research for a cure! Check out more pictures from the 2011 Patient Meeting here. 2011 Running for Answers 5K On October 22, 2011, 120 patients, family members and friends attended our 5th Annual Patient Meeting at the Philadelphia Marriott Courtyard Downtown. The patient meeting was followed by our second annual Philadelphia Running For Answers Race/walk. An incredible 500 runners joined in the 5K race/walk and kids fun run through Fairmount Park on a beautiful crisp, sunny fall day. We raised approximately $150,000 for desmoid tumor research!! This year we had extraordinary participation from patients and their families as they initiated individual and team fundraising efforts. There were several teams and individuals that raised over $10,000 each! A few individuals even raised over $16,000 to help further the cause. Their hearts and hopes were in every dollar raised. The Title Sponsorship was provided by Satanoff Agency and other sponsors included Quest Diagnostics, Abbey on the Road, Buckeyballs, KPMG, the Cancer Treatment Centers of America, City Sports, Fairmount Park, Philadelphia Runner, Vita Coco, Lap4Life, Carlos Cintron Photography, Please Touch Museum, Rassler Financial, Road ID and Susquehanna Bank. This incredible weekend left us renewed and invigorated in our mission to fund research for a cure! Check out more pictures from the 2011 Running for Answers 5K Run/ Walk and Kids’ Fun Run here.
2010 Patient Meeting, Running for Answers Walk and Brunch The Patient Meeting 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.