2010 Team Sarcoma / Washington, DC – Drink to Defeat Desmoids

Drink to Defeat DesmoidsDrink to Defeat Desmoids
Washington, DC

The first of many “Drink to Defeat Desmoids” to come was a great success, raising over $500 for The Desmoid Tumor Research Foundation (DTRF). This number does not include the additional online donations that were made in lieu of attending the event.

An estimated 50 guests met to socialize for happy hour at the petite, yet chic, wine bar and bistro, Vinoteca, in Washington, D.C., where they enjoyed a refined wine list and a decadent bistro menu. Guests who gave to the cause were able to get the incredible happy hour prices ($5 wines and $5-$10 gourmet food items) until 9pm that evening – two hours after Vinoteca’s normal happy hour ends. Successfully satisfying the tag line for the event: Wish happy hour lasted longer?

An eclectic, but young-professional crowd gathered quickly and lasted into the evening. The staff took great interest in the cause and making sure the event was a complete success by remembering guest’s names, as well as keeping track of a large number of tabs throughout the evening.

The next “Drink to Defeat Desmoids” will take place in early September at another fabulous happy hour spot in downtown D.C., Ella’s Pizza. Guests will enjoy an extended happy hour till 8pm and those who donate will be entered in raffle drawings for exciting prizes.

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2009 Team Sarcoma “Core Team” Bike Tour

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The Team Sarcoma Initiative started with a small team of seven cyclists, and this year the “core team” was once again a central part of the Initiative. The Bike Tour took place on the historic Chesapeake and Ohio Canal towpath from Cumberland, Maryland to Washington, DC from July 18-25, 2009. The tour provided a special opportunity for 45 patients, survivors and friends to interact with others who have been touched by sarcoma, to see beautiful places and to have fun together. Participants traveled from 10 countries to join the core team and had dealt with 11 types of sarcoma.

In addition to cycling 184.5 miles, members of the core team took part in a beautiful indoor luminary service on Thursday night and a special reception on Friday night. Throughout the week, the group shared much laughter and a few tears as they discussed their experiences and enjoyed making memories together. There were 82 participants total, including day-trippers and special guests, and the tour was covered in the Cumberland Times-News. Distinguished speakers during the week included:

  • Ambassador Audrius Bruzga of Lithuania
  • Ambassador Roy Ferguson of New Zealand
  • Ambassador Arturo Sarukhan Mexico
  • Dr. David Loeb, Director of the Musculoskeletal Tumor Program, Johns Hopkins Kimmel Cancer Center
  • Dr. Crystal Mackall, Chief of the Pediatric Oncology Branch of the National Cancer Institute
  • Dr. Martin Makary, Director of the Johns Hopkins Center for Surgical Outcomes Research
  • Dr. Jeffrey Toretsky, Associate Professor at the Departments of Oncology and Pediatrics, Lombardi Comprehensive Cancer Center
  • Mary Curtin-Savard, author of The Letters

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Dignitaries Honor Participants in the Team Sarcoma Initiative

Ambassadors from Lithuania, Mexico, and New Zealand gathered with physicians and government representatives on July 24, 2009, in Washington, DC, to honor people dealing with sarcoma, a rare and dangerous cancer. The reception was a part of the global Team Sarcoma Initiative (TSI), a growing movement that involved more than 14,000 people in 14 countries last week.

Ambassador Roy Ferguson of New Zealand expressed appreciation for the grass-roots effort: “When I heard that this sarcoma awareness week started in 2003 with 7 people in Louisiana, and this year will have 12,000 people in [14 countries, that’s an amazing example of success. And I think it reflects the fact that this terrible disease knows no boundaries. And it really reflects a common humanity: it doesn’t matter whether you live in the United States, New Zealand, Mexico or wherever you live, any of us could be subject to this disease.”

Sarcoma is a cancer of the connective tissues, such as nerves, muscles and bones. Sarcomas account for 15-20% of childhood cancer diagnoses and about 1% of adult cancer diagnoses. They are often misdiagnosed and resistant to current treatments. Though sarcomas are rare, they affect hundreds of thousands of people worldwide.

Patients, survivors and families at the event traveled from 10 countries and arrived in DC after cycling and touring 184 miles from Cumberland, MD. At the start of the reception, they mingled with the distinguished guests and shared their experiences with sarcoma. People of all ages spoke in many languages about the joys and challenges of life while dealing with the rare disease.

Mexican Ambassador Arturo Sarukhan was moved by the accomplishments of TSI participants, who have raised more than $1.5 million for sarcoma research and support since 2003. He said, “The work that the Team Sarcoma Initiative has carried out over the last six years is an impressive display of the impact that committed individuals from within civil society can have to further a specific cause.”

The ambassador went on to say that the movement as an example for both individuals and governments: “I believe that, as diplomats, we have much to learn from such efforts, as individuals in civil society organizations from around the world work together across borders to face a disease that knows no borders.”

The mantra of TSI, ‘Sarcoma Knows No Borders’ was emblazoned on the wristbands worn by guests at the reception, as well as participants around the world. During the week, barriers dissolved as patients, communities, advocacy groups, and medical professionals worked to improve the lives of everyone dealing with sarcoma. More than 80 events were hosted by 28 cancer centers, 25 advocacy groups and over 30 other groups during the International Sarcoma Awareness Week.

Lithuanian Ambassador Audrius Bruzga was pleased that Team Sarcoma events were occurring in his country: “People are motivated, and they are motivating other people to get involved, to be active, and to share this awareness.”

Dr. Crystal Mackall, Chief of the Pediatric Oncology Branch of the National Cancer Institute, spoke about the cooperative spirit of TSI: “The only real way that any of us can make a difference is by working together. This is true for any problem, but it can’t be any truer than for a rare disease like sarcoma. We are absolutely dependent on philanthropy, government, industry, all kinds of other people to fund our ideas. And even if we get all the funding in the world…if we don’t have the trust of our patients, we are not able to test our new treatments.”

Dr. Martin Makary, Director of the Johns Hopkins Center for Surgical Outcomes Research, talked about the trust that exists between sarcoma patients and their physicians: “That trust is most intense when we’re dealing with cancer. And the trust is thus the greatest in strength when we’re dealing with unique cancers.”

The hope of the Team Sarcoma Initiative is that increased awareness and research funding will improve the diagnosis, treatment, and support offered to everyone who is touched by sarcoma, the ‘forgotten cancer.’ But Dr. Mackall explained that this movement is about more than hope: “We all need to go beyond hope. We need to expect that the future will bring great things, and that we are going to accomplish those things together.”

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The Team Sarcoma Initiative is a coordinated set of events to increase awareness of sarcoma, and to raise funds to support sarcoma research, clinical trials, and patient and family services. The 2009 Initiative was accomplished by hundreds of people from medical centers, advocacy groups, and patient and family groups. The global Team Sarcoma Initiative is coordinated by the Liddy Shriver Sarcoma Initiative, an all-volunteer organization dedicated to improving the quality of life for people dealing with sarcoma.

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2009 Team Sarcoma / Lombardi Comprehensive Cancer Center

Art Events for Children and Adults
July 23, 2009
Washington, DC

UPDATE: Forty-five patients and their family members participated in art therapy programs for children and adults at Lombardi Comprehensive Cancer Center. Passers-by enjoyed the art and picked up brochures about sarcoma.

Lombardi Comprehensive Cancer Center will hold two special Team Sarcoma events for pediatric and adult patients.

The Pediatric Art Therapy and Games Event will take place at the Pediatric Hematology/Oncology Clinic at Lombardi on July 23rd at 11:00 a.m. An art therapist will work with young oncology patients to use art materials to create posters and engage in creative play about stomping out sarcoma. Pediatric Oncology social workers will have some fun games and activities to assist in stomping out sarcoma. For more information about the pediatric event, please contact Mary Lane, LICSW.

The Team Sarcoma Adult Art Project will take place in the Lombardi Atrium on July 23rd at 11:00 a.m. Guest artist Harriet Weiner will offer a mixed media art project for adults. For more information about the adult event, please contact Nancy Morgan, Director of the Arts and Humanities Program.

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2009 Team Sarcoma “Core Team” Bike Tour

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July 18-25 in Maryland and Washington, DC

The 2009 Team Sarcoma Bike Tour will take place on the historic Chesapeake and Ohio Canal towpath from Cumberland, Maryland to Washington, DC from July 18-25, 2009. These tours provide a special opportunity to interact with others who have been touched by sarcoma, to see beautiful places and to have fun together. We hope that you will consider joining us. To read more, view the announcement, the detailed itinerary and the registration form.

If you can’t join us in Maryland and Washington, please consider planning a local 2009 Team Sarcoma event. People all over the world will be hosting Team Sarcoma events from July 18-26. With your help, we hope to involve 8,000 participants in this year’s Initiative.

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2008 Team Sarcoma / Lombardi Comprehensive Cancer Center

What: “Sarcoma Update”
When: Friday, July 11 at 3:30 PM
Where: Washington, DC

Report: Team Sarcoma/ Lombardi Comprehensive Cancer Center hosted a “Sarcoma Update” for sarcoma patients, survivors, caregivers and anyone who would like to know more about this cancer. About 25 people attended the event. Gabi Perazza along with Dr. Jeffrey Toretsky planned, and organized the event. Dr. Aykut Üren and Dr. Toretsky both prepared PowerPoint presentations.

We opened the event with the video “A Forgotten Cancer.” Following the video, Kevin Chen, talked about both his involvement as a student / researcher at the Toretsky/Üren Lab studying Ewing’s and Osteosarcoma, as well as, his experience as a patient, going through being diagnosed with Osteosarcoma. Dr. Üren then spoke about his advancements and studies in Osteosarcoma, which can be explained here. Following Dr. Üren, Dr. Toretsky spoke about his research development in Ewing’s Sarcoma, which can be explained here, and has also been featured in The Lombardi Magazine Summer 2008 issue entitled Potential Ewing’s Sarcoma Targeted Therapy Discovered, where he stated, “Ewing’s Sarcoma is rare, but our work has the potential to improve treatment not only for patients with this disease but for others who have cancers with similar molecular characteristics.”

After all speakers presented and questions were addressed, there was a reception with refreshments, which included fruits, cheeses and chocolate, along with Italian sodas and wines, which were catered by Gabi.

Among those who attended the event was a journalist from the Lombardi Magazine. The event should be featured either in the Fall 2008 or Winter 2009 issue. Lombardi Magazine is produced four times a year for patients and their families, community members, and friends of the Lombardi Comprehensive Cancer Center at Georgetown University Medical Center.

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