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The "Our Initiatives" column provides an update on some of the ongoing projects of the Liddy Shriver Sarcoma Initiative.
In this issue:
Bridge Tournament in the Netherlands Raises $58,000 for Ewing's Sarcoma Research
The organizers’ aim in planning the SABD was twofold: (1) raising awareness for sarcoma, the forgotten cancer; and (2) raising funds for sarcoma research through the Liddy Shriver Sarcoma Initiative. Looking at the formidable results, one wonders which aim was most successful: the almost unprecedented amount of money the organizers’ managed to raise or the number of people involved.
The most unique part of their fundraising was referred to by the Dutch press as “Las Vegas in Leiden”. Most of Netherlands top bridge players volunteered to play with bridge amateurs. The players were “sold” to the highest bidders and the revenues went straight to the research funds. All the other participants paid their registration fees of 60 Euro and most of them paid some extra to support this event.
68 pairs joined in SABD with its motto, “One bridge team, one opponent: sarcoma”. ADG sold 128 advertisements for two booklets (program book and a booklet with comments on every board by the Dutch junior team) and attracted more than 100 sponsors (family, neighbors, relatives, friends and clients). They managed to collect 80 prizes, almost all for free by good willing shop owners and restaurants. There were over 40 volunteers (directors, website and graphic design, catering, service, silent auction of paintings, artist Andrez and photography etc.). One of the most successful elements of the tournament was the clinics the Dutch top players gave after every eight boards. Four newspapers and two Dutch bridge magazines covered the event.
Here are a few quotes of the participants. André Mulder, myriad Dutch champion: “This tournament wasn’t about winning from our direct adversaries during the day, but about the warmth of doing something together to fight the sarcoma enemy.” Sonja Defilet, participant and caterer: “If Paul would know about this, he would be infinitely proud of his mom.” Roel Piket, co-organizer of the event and chairman of bridge club ADG: “The more we raised, the more I became aware of the necessity of sarcoma research.” Jan van Cleeff, editor of IMP: “A great day for the organization and a great day for sarcoma awareness and research.” Russell Ekeblad, one of America's best senior players, who visited the Netherlands specifically to join this event: “Why not have another SABD next year? I’ll be happy to participate once more.” The organizers' think the success of the formula will be more easily duplicated if the SABD will take place every 5 years instead of annually (not to mention their ability to go through all the motions again with the same energy). They note that the combination of raising awareness and funds through a tournament is in itself a successful formula, easily copied by others, whether it is a mind game like bridge or chess or other types of events. Truus told us, “It was much more work than I anticipated. One has to be a terrier to convince people to make donations. There are many other Dutch charity events and the only reason I think ours was more worthwhile is that my 18 year old son went trough the terror of losing his life to Ewing’s sarcoma. It wasn’t always easy to convince everyone how important research for sarcoma is. Raising awareness, though less easy to measure than raising money, seemed easier. The informative talks, the website, the name of the tournament, the posters, the flyers, the press coverage all helped to make ‘sarcoma’ a better known disease. One last remark: It took a lot of energy to organize this site event, but the energy I got in return was paramount to it.” You can view photos of the event by clicking here.
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Participants in the Dublin Mini Marathon Raise over $18,000 for Osteosarcoma Research
Una O’Hagan, Sean's mother, and the "Remembering Sean Keane" team raised $18,714.40 for osteosarcoma research. “The highest proportion of cancers in children are sarcomas which can all too often be misdiagnosed as sports injuries,” said Mary O’Hagan. Earlier this year Una's family donated over $6000 in Sean's memory. At that time, she told us, "Just before he passed away, he suggested that we make a donation to cancer research. Your charity appears to me ideal, not least because we used it in our search for information and help in trying to beat this terrible disease".
These two donations, in Sean's name, have been use to fund, in part, research in osteosarcoma by Jilong Yang, MD, PhD at Tianjin Cancer Hospital in China and Wei Zhang, PhD, at M. D Anderson Cancer Center in Texas (see "Characterization of WWOX tumor suppressor gene in osteosarcoma") and to support osteosarcoma research by Peter F. M. Choong, MD and Crispin Dass, PhD, at St. Vincent’s Hospital in Melbourne, Australia (see “Pigment Epithelium-Derived Factor (PEDF) as a candidate molecule for targeted therapy in the treatment of osteosarcoma”).
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2009 Team Sarcoma Event Planning The Team Sarcoma Initiative is an internationally coordinated set of events to raise awareness of sarcoma and raise funds to support sarcoma research, clinical trials, and patient and family services. The annual effort consist of a “core” Team Sarcoma Bike Tour and local Team Sarcoma events that are held worldwide during the same week that the bike tour takes place. The Team Sarcoma Initiative has become an International Sarcoma Awareness Week with over 8,000 people participating worldwide in 2008. In order to give the planners of local Team Sarcomas more flexibility in planning their activities, the official dates of the 2008 Team Sarcoma Initiative are announced early this year. They are July 18-26, 2009. Click here to learn more about the 2009 Team Sarcoma Initiative. The mantra of the Team Sarcoma Initiative is "Sarcoma Knows No Borders". We use this phrase because sarcomas can occur anywhere in the body and they don't discriminate on age, gender, race or nationality (see article below).
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The Faces of Sarcoma Project As mentioned in the above article, the Team Sarcoma Initiative is an internationally coordinated set of events. We have updated the video presentation "A Forgotten Cancer" which contains basic information about sarcoma and the Team Sarcoma Initiative. We are also producing a complementary video presentation called "The Faces of Sarcoma" which will contain photos of sarcoma patients and survivors and those who have lost their lives to sarcoma.
The early response to our request for photos to be included in "The Faces of Sarcoma" has been wonderful. Over 300 from over 25 countries and representing over 30 different subtypes of sarcoma have been sent to us. You can view these photos in a traditional "gallery" format until the video presentation is made by clicking here (click on a thumbnail to view a complete photograph). There is a search function in the lower left hand corner of each page.
Each person included in the gallery has furnished the photo, proof-read the caption, and agreed to let us include the photo and caption in this project. If you would like to have your photo included Please send us a JPG of the photo that that you would like us to use as an attachment to your e-mail and not embedded in it. Higher resolution photos work better. Please complete the following caption: First name, age in photo, specific type of sarcoma, country. We should also mention that there are four additional translations underway.
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The "Sarcoma Knows No Borders" Bracelet We have received such an incredible response to the "Sarcoma Knows No Borders" bracelets, that we thought we should mention them again. We have received over thousands of requests from all over the world for them. The background color of the bracelet is a swirl of a pathology slide of a sarcoma patient. The bracelet is reversible. "Sarcoma Knows No Borders" is printed on one side and the word "sarcoma" is printed in 13 of the world's languages on the other side. We use the phrase "Sarcoma Knows No Borders" because sarcomas can occur anywhere in the body and they don't discriminate on age, gender, race or nationality. Each bracelet is individually packaged. Many boys and girls and teenagers wear them as an ankle bracelets. If you are interested in obtaining some of these bracelets, please click here.
Photos of the "Sarcoma Knows No Borders" Bracelets
You might also want to read about our "Sarcoma Knows No Borders" ribbon by clicking here.
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Team Sarcoma T-Shirts and other Odds & Ends
Team Sarcoma T-Shirts can be purchased online at the "Team Sarcoma Store Front" on the Cafépress website. There are a wide range of men's, women's, Junior's, kid's, and infant's styles. The official Team Sarcoma shirts have the Team Sarcoma logo on the front and "Sarcoma Knows No Borders" on the back. Although we en encourage you to wear your shirt during International Sarcoma Awareness Week when thousands of people will be participating in the Team Sarcoma Initiative, we encourage you to wear it often to continue to increase public awareness of sarcoma all year long. In addition to English, T-Shirts are also available in Chinese, French, Dutch, German, Italian, Japanese, Polish and Spanish. Some of the shirts are shown below. The price of each shirt includes a $5 donation to sarcoma research via the Liddy Shriver Sarcoma Initiative's Research Grants Program. Click here to visit the Team Sarcoma Store Front on the Cafépress website.
Click on any of the above images to enlarge it.
There are also Team Sarcoma buttons, baseball caps, bears, and more on the store front.
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Music CD, The Circle, Benefits Sarcoma Research Singer songwriter Ron Martin is a multi-instrumentalist from North Carolina. He is sharing the proceeds from the sale of his CD, The Circle, with the Liddy Shriver Sarcoma Initiative to help fund sarcoma awareness and research. The CD makes a very nice holiday, birthday, anniversary or graduation gift. Click here to find out more details.
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Clinical Trial Abstracts Now Exceed 340 Entries We have collected and summarized information on over 340 clinical trials that sarcoma patients may be eligible to participate in. Some of the trials are for specific sarcomas while others cover several sarcomas. Each trial has its own eligibility requirements. The data has been collected from sources in different countries. We have grouped the studies into three categories:
You can access any of these web pages by clicking one of the above links. Some hints for searching our clinical trial abstracts are found by clicking here.
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If you haven't read the entries in our Guest Book recently, you may want to do so (please click here). We also invite you to make an entry (please click here).
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V5N4 ESUN Copyright © 2008 Liddy Shriver Sarcoma Initiative. |
Over
40,000 women ran in the World’s biggest Charity Run, the Flora Women’s Mini
Marathon in Dublin, Ireland this past June. A group of 30 of them were
running, walking and in one case, getting pushed around the mini marathon
course to raise funds to support osteosarcoma research. The group consisted
of family, friends and RTE work colleagues who were remembering the late Sean
Keane who died of metastatic osteosarcoma at the age of 20, four years after
he was diagnosed. [Photo: Members of the
"Remembering Sean Keane" Team.] The team members wore a T-Shirt with a photo
of Sean on the front and the Liddy Shriver Sarcoma Initiative on the back.
