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by Tom Swartz and Bruce Shriver
In this issue's column:
caBIG™ (the cancer Biomedical Informatics Grid) is an information network enabling researchers, physicians, and patients to share data and knowledge. The caBIG™ initiative was launched by the National Cancer Institute in February 2004 under the coordinating supervision of the Center for Bioinformatics (NCICB). Molecular medicine — the diagnosis and treatment of disease based on a detailed knowledge of the interaction and function of genes, proteins and other biomolecules — is the basis of much contemporary cancer research. Molecular-based research generates an enormous amount of complex genetic data which needs to be integrated with separate and distinct clinical data. However, molecular-based research is based on disparate document and data formats, making it difficult to leverage in meaningful ways. The mission of caBIG™ is to develop a collaborative information network that accelerates the discovery of new approaches for the detection, diagnosis, treatment, and prevention of cancer, ultimately improving patient outcomes. The goals of caBIG™ are to: (a) Connect scientists and practitioners through a shareable and interoperable infrastructure; (b) Develop standard rules and a common language to more easily share information; and (c) Build or adapt tools for collecting, analyzing, integrating, and disseminating information associated with cancer research and care. As of May 2006, there are more than 50 cancer centers and 30 organizations involving over 800 people working collaboratively on caBIG™. You can download a list of participating institutions by clicking here. A list of the various caBIG™ programs, tools, and its relationship to other NCI Initiatives can be found under the “caBIG™in Action” on the caBIG™ website.
LMSeAlerts: Leiomyosarcoma News LMSeAlerts is a news service founded by Sharon Anderson. It is for families and professionals involved with Leiomyosarcoma (LMS), a rare soft tissue sarcoma. Subscribers to the service will receive occasional brief LMS/sarcoma related news including:
LMSeAlert's mission is to provide communication to everyone and every group in the LMS community. This is an "announcement only" service; it is ideal for those who do not participate in discussion groups but wish to stay informed and connected to the LMS community. LMSeAlerts does NOT accept donations or represent any foundations, list groups or commercial interests. Click here to submit your announcements, news or suggestions to LMSeAlerts.
The Cure Our Children Foundation, a nonprofit charitable foundation, recently announced the availability of its extensively updated webpage entitled "Financial Assistance and Scholarships Information Page" which provides complete contact information, web links and phone numbers for assisting families that have children with cancer or other life-threatening diseases. Key information includes:
The Cure Our Children Foundation's research is available at no cost on their website.
The Seventh Edition of the Sarcoma-UK Newsletter (Autumn/Winter 2006/7) can be download by clicking here. Among the contents are articles on Primary Care Trusts and New Treatments, Implementing NICE Guidance, Current clinical trials, and a questionnaire on support meetings. Roger Wilson, who has written articles for ESUN in the past (see Sarcoma Service Guidelines in the UK and Improving Outcomes for People with Sarcoma: the UK Sarcoma Guidelines) is the Editor of the Sarcoma-UK Newsletter. You can contact him by e-mail by clicking here.
Sarcoma Patient Information Pathway Following the publication by the UK's National Institute for Health and Clinical Excellence (NICE) of national guidance for the provision of services to sarcoma patients (see Improving Outcomes for People with Sarcoma: the UK Sarcoma Guidelines) a team of nurses and key support staff in the West Midlands (of England) have been working on an information structure, supported by Sarcoma UK. Pooling their knowledge of information already available at the two specialist hospitals which treat extremity sarcoma (Royal Orthopeadic in Birmingham and Robert Jones & Agnes Hunt in Oswestry) and that provided by support charities they are identifying gaps which can be filled and are working towards the common provision of a standard library of information materials. The presented a poster session describing this effort at the Annual Connective Tissue Oncology Society meeting which took place in Venice, Italy in early November 2007. You can down a PDF copy of this poster by clicking here (note, this is a large 2MB file).
The Bone Cancer Research Trust was formed in 2005 as an alliance of a number of established local charities and groups of family and friends of Primary Bone Cancer patients throughout Britain and Ireland. They share a common goal – to promote research into the causes and treatment of Primary Bone Cancer, and in particular of Osteosarcoma and Ewing’s Sarcoma. The Trust has now widened its membership to include Bone Cancer Patients, Medical Practitioners and anyone interested in supporting research into these disabling and life-threatening diseases. The Trust is also looking to provide information, support and, in the longer term, counseling services for those suffering from Primary Bone Cancer, and their families. One of the basic aims of the BCRT is to promote research into Primary Bone Cancers and particularly Osteosarcoma and Ewing's Sarcoma. The charity is interested in any research that can improve outcomes for patients so will consider research applications from a wide variety of perspectives. These include biological, translational, clinical, epidemiological, psycho-social and health services research. The charity is particularly interested in providing 'pump-priming' grants that might initiate or support work that could lead to more substantial applications for national or international funding.
According to its website, the aims of the British Sarcoma Group (BSG) are to:
The BSG promotes collaboration between different specialists and institutes involved in the treatment of sarcomas and to foster training and education. Click here to visit the BSG’s website and explore its resources. See the Upcoming Conferences, Meetings, Events and Fund Raisers section (below) to read about the BSG's Annual Meeting in February 2007.
European Cancer Patient Coalition The European Cancer Patient Coalition (ECPC) was formed to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences. ECPC currently has over 190 national members across the European Union. In the ECPC Flyer it states that the ECPC Objectives are:
There are a number of interesting resources and initiatives described on their website, including various Cancer Facts & Figures.
Talking To Your Children About Your Cancer Diagnosis & TreatmentYou have just received a diagnosis of cancer. You probably tell your husband or wife and your closest friend, but when do you tell your children? And what do you tell them? You are feeling stunned and shaken...how can you possibly help them deal with what is clearly going to be a life-changing event? Explaining cancer to a child is difficult and requires thoughtfulness, compassion, and some understanding of how children of different ages deal with trauma. This article from the Pine Street Foundation recognizes that a cancer diagnosis is a unique type of trauma in that usually there is no immediate danger but rather a chronic anxiety and fear of what will happen and often over a great length of time. Tips and suggestions on how to talk to children about such a trauma are provided for children of different ages and cognitive abilities.
BSD Medical Announces Completion of 340 Sarcoma Patient Chemotherapy and Hyperthermia Study On December 6th BSD Medical Corp. announced the conclusion of a Phase III clinical study involving 340 high-risk soft tissue sarcoma patients that evaluates the results of treatments delivered by the company's BSD-2000 cancer therapy system. The purpose of this multi-center, randomized, international clinical study was to compare the results for patients who received a combination of chemotherapy and hyperthermia therapy (through BSD-2000 systems) to those who received chemotherapy alone. The study has been conducted under the direction of the European Society of Hyperthermic Oncology (ESHO RHT-95) and the European Organization for Research and Treatment of Cancer (EORTC 62961 is listed on the www.clinicaltrials.gov website. The BSD-2000 system was used in this clinical trial because of its ability to deliver precision-focused deep hyperthermia therapy. An article in the September 2006 issue of CANCER (see vol. 107, Issue 6, pp. 1373-1382), the official journal of the American Cancer Society, also evaluated BSD Medical's BSD-2000/3D/MR for its application in monitoring regional hyperthermia treatments in patients with soft tissue sarcomas of the lower extremities and pelvis. The BSD-2000/3D/MR has the desirable capability of imaging treatments in progress through magnetic resonance imaging (MRI) by means of a process called "thermography." The report concluded that "Noninvasive MR thermography of soft tissue sarcoma was feasible and suitable for validating the quality of heating during RHT (Regional Hyperthermia)." The trial was concluded December 4, 2006. The results of the trial have not yet been released.
$120m gift for cancer research, including sarcoma The estate of a wealthy New York businessman who died in 1992 is donating $120 million of his real estate fortune to six cancer research organizations, including Dana-Farber Cancer Institute and the Massachusetts Institute of Technology. The six recipients will get $20 million each this year and millions more in future years. The Ludwig Institute for Cancer Research, which was established by shipping tycoon Daniel K. Ludwig, announced the gift November 14th. Board members of the nonprofit foundation said they have asked the six institutions to abide by several stipulations, including to collaborate on research projects and to study how cancer spreads in the body. The foundation's board also urged the researchers to choose daring, high-risk projects that might not win government funding. The gift makes Ludwig the largest private source of cancer research funding at MIT, and is one of Dana-Farber's larger gifts. Each of the six recipients -- which also include Johns Hopkins University in Baltimore, Memorial Sloan-Kettering Cancer Center in New York City, Stanford University in Palo Alto, Calif., and the University of Chicago -- will decide which research projects to fund with their share of the money. The Ludwig Institute is also giving the institutions a 35 percent ownership share in two large Manhattan office buildings, which they can sell after 2013, with the hospitals and universities keeping their profit. Executives at Ludwig Institute said they do not know the dollar value of the buildings, but expect the profit, along with this year's donation, to provide an endowment large enough to generate $2 million for each institution per year indefinitely. Ludwig "felt cancer was one of the great unmet challenges, and he was a man who never shirked from unmet challenges," said the institute's board chairman, Dr. Lloyd Old, a renowned cancer researcher at Sloan-Kettering. Ludwig decided to bequeath his money for cancer research although he had no apparent history of cancer in his family, said Edward McDermott Jr., a board member and president of the Ludwig Institute, Ludwig died of heart failure at age 95. Recently, researchers have begun to understand more about the biological and genetic underpinnings of metastasis, increasing hope that they will discover drugs to stop the deadly process. That makes the timing of the Ludwig gift particularly fortuitous, said Robert Weinberg, a biology professor at MIT and one of the researchers who will benefit from the grant. Ludwig, born in South Haven, Mich., started in business at age 9, selling popcorn, shining shoes, and using his money to buy a dilapidated boat for $75, which he repaired and rented out for a profit, according to his 1992 obituary in the New York Times. At the height of his shipping career, he owned 60 ocean-going vessels, used for international transport. In 1971, Ludwig founded the Ludwig Institute, based in Switzerland and New York, which conducts cancer research. Before he died, he had wanted to create a separate pool of money to go to particular institutions. Following Ludwig's direction, Old picked the six institutions he felt were outstanding in cancer research. This fund has already given the six a total of $53 million as endowments to pay for two professors each, beginning in 1993. The $120 million that will be distributed this year is profit from the recent refinancing of the mortgages on the two Manhattan office buildings. "This will allow these people who are world leaders to be more daring, because the traditional mechanisms of funding don't provide the certainty or the long time horizon," McDermott said. The money is one of the larger gifts to Dana-Farber, and will permit researchers at Dana-Farber to expand current work and start projects in areas such as cell-signaling, genetics, and the reason very young cells turn into cancer cells, rather than another type of cell, said Dr. George Demetri, director of the Center for Sarcoma and Bone Oncology at Dana-Farber and director for clinical and translational research at the Ludwig Institute. Combined with the $8 million for professorships, the $20 million will be the largest gift from a private source to MIT for cancer research, said Cynthia LuBien, assistant dean for development in the MIT School of Science. A half-dozen MIT labs will work on understanding metastasis, Weinberg said, including developing mouse models and examining how cancer cells may "turn on early embryonic cell behavior" to allow them to spread, "a very hot, rapidly growing area of research."
Guidesmith - Leadership, Teamwork, and Decision-Making in High-Stakes Situations Guidesmith is a website that focuses on how you can use leadership, teamwork, and decision making skills to guide yourself, or someone else, through high-stakes situations such as cancer diagnosis and treatment. Guidesmith is hosted by Jeff Belkora. Ph.D., a faculty member at the University of California, San Francisco (UCSF). He conducts research as an Assistant Adjunct Professor in the Department of Surgery, and contributes to patient care as the Director of Decision Services at the UCSF Breast Care Center. Belkora presents articles on tips on how to participate in decisions about your care, “Top Ten Decision Lessons”, “Seven Steps to Survive”, and other resources on decision making.
Cancer terms may sometimes be difficult to understand. You may hear your doctor use certain medical terms, and you may not know what they mean. It is important to understand these terms, so you can make the best informed decision about your cancer treatment. People Living With Cancer (information provided by the American Society if Clinical Oncology) has assembled this four-part series of articles designed to help people with cancer understand commonly used medical terms. The first in the series defines basic oncology terms. The remainder of the articles address terms for the newly diagnosed, terms used during treatment, and terms used after treatment.
Brian Morden Foundation to Benefit from "Season of Sharing" Proceeds from the second Altoona Mirror Season of Sharing will benefit pediatric cancer patients through the Brian Morden Foundation (BMF). The local newspaper and the Brian Morden Foundation are both based in Altoona, Pennsylvania, where Brian Morden, a courageous teenager who battled Ewing's Sarcoma, lived all of his 19 years. The Season of Sharing has included weekly full page ads soliciting donations, a news story about Brian and the BMF, as well as a column by a well-loved area writer. In addition, a portion of the proceeds from two musicals held at the local historic Mishler Theatre will benefit the Brian Morden Foundation, which in turn will help fund research to find a cure for Ewing's sarcoma and childhood cancers, support patients family, and staff of pediatric oncology units, and provide higher education scholarships.
Two by Two is a t-shirt campaign raising awareness and support for sarcoma. The campaign name represents the two steps participants must complete to join the cause: (1) Wear the Two by Two t-shirt; and (2) Tell two more people to join the campaign. Two by Two is sponsored by the Amschwand Sarcoma Cancer Foundation (ASCF) of Houston, Texas. ASCF has played an influential role in educating the public about sarcoma, supporting those affected by the disease, and encouraging sarcoma-specific research since its inception in February of 2001. All proceeds raised by Two by Two will benefit the Foundation. Eighty percent will be granted to doctors and scientists specializing in sarcoma-specific research. The remaining funds will be used towards other programs sponsored by ASCF. Two by Two was created by a college student who discovered the significant lack of advancement in research and treatment for sarcoma and wanted to make a difference within the cancer community. By focusing attention on an often neglected cancer, Two by Two hopes to make a true impact within the cancer community - a community we are all apart of. Two people, two steps at a time, ASCF hopes to generate awareness and support for sarcoma cancer. How Can You Join? It’s simple. Wear the Two by Two t-shirt, and tell two others about the campaign. Click on the Two by Two link to purchase t-shirts on line as well as finding out tips on bringing the campaign to colleges and universities, community organizations and corporations.
2006 Catwalk for a Cure – a Smashing Success
The
2006 Annual Catwalk for a Cure® awareness
luncheon and fashion show benefiting the
Amschwand Sarcoma Cancer Foundation rocked the runway
once again on October 12, 2006 in Houston. Champagne,
Gran Centario
Tequila Lemonade, and conversation about the event and its
cause were all flowing abundantly. Celebrity guest and
What Remains author
Carole Radziwill
flew in from New York Wednesday evening to attend a fabulous underwriter
reception at the
Strip House
restaurant. The downtown restaurant served up blackberry martinis and
created an opportunity to thank this year's generous underwriters.
Immediately following the reception, Radziwill was whisked away to meet up
with Saks
Fifth's acclaimed designer
Naeem Khan
for a private dinner at the lovely home of gracious hosts
John and Becca Cason
Thrash. Among the intimate group attending were major
underwriters
Jana and Richard
Fant and
Saks
new general manager
Terry Zmyslo
and fashion manager
Sylvia Forsythe.
The luncheon itself was the perfect mix of fashion and passion for a very
important cause -- sarcoma cancer. Emcees
Michael Kemper
and Jan
Carson
kept the energy flowing in the room while guests dined on delectables. There
were no dry eyes when eighteen year old sarcoma survivor and Catwalk honoree
Erica
Plummer addressed the room. The event ended on a high
with dessert for both the tummy and eyes when Saks Fifth Avenue designer Naeem Khan's designs hit the runway. Event goers left with bags brimming
with all sorts of goodies provided by
Michael Kemper
Salons, Ressurect, Cellcosmet Cremes, STIFFS, Aveda, PaperCity, ARIAD
Pharmaceauticals and more. All together the event
raised nearly $200,000 for the cause. To learn more about this year's event,
or to help in planning Catwalk 2007 please call
Upcoming Conferences, Meetings, Events and Fund Raisers
January 2007 Molecular Targets in Cancer Therapy: Fourth Biennial Meeting H. Lee Moffitt Cancer Center & Research Institute is presenting the Molecular Targets in Cancer Therapy: Forth Biennial Meeting which is titled "Mechanism & Therapeutic Reversal of Immune Suppression in Cancer." It will be held on January 25-28, 2007 in Clearwater Beach, Florida. According to the conference brochure, "The purpose of this meeting is to foster exchange of the most recent findings and ideas in tumor immunology. Despite high promise, cancer immunotherapy so far has not delivered tangible clinical benefits. It is now clear that without understanding the mechanisms of tumor induced immune suppression, further progress in this area will not be possible. By this time, a large number of possible mechanisms of immune suppression in cancer have been proposed. They form a foundation for current and future clinical trials; however, this wealth of information has created a very convoluted picture. Proposed mechanisms compete with each other. There is a pressing need for the entire field to discuss already described and new emerging mechanisms to see how they can be put together in more or less cohesive structure. Special emphasis will be placed on new approaches to therapeutic correction of observed abnormalities."
Treatment Update on GIST There will be a CANCERCare Telephone Education Workshop called "Treatment Update on GIST (Gastrointestinal Stromal Tumors)" on January 30, 2007, beginning at 1:30 PM. You sign up for this workshop by visiting the CANCERCare website. Click here to see the calendar of upcoming workshops.
February 2007 British Sarcoma Group Conference 2007 The British Sarcoma Group (BSG) Conference 2007 will take place on February 1-2, 2007 at Thistle Manchester Hotel, Portland Street, Piccadilly Gardens, Manchester M1 6DP. The Conference Program is designed to attract everyone interested in the diagnosis, care and treatment of patients with sarcoma. Sessions in the Conference will provide a forum for debate about the implementation of the NICE Service Guidance and an opportunity to share their experience of developing early diagnosis services. You can download the conference brochure by clicking here.
GIST Symposium There will be a GIST Symposium on February 2, 2007 in Düsseldorf, Germany. For more information, see the Das Lebenshaus (a German sarcoma initiative) website, www.daslebenshaus.de.
March 2007 The Society of Gynecologic Oncologists 38th Annual Meeting on Women's Cancer™ The Annual Meeting on Women's Cancer™ is considered to be "the premier educational and scientific event for physicians and health care professionals involved in the field of gynecologic oncology". The meeting attracts medical and radiation oncologists, pathologists and gynecologic nurse oncologists. It will be held March 3-7, 2007 in San Diego, California. You can download the advance program by clicking here.
April 2007 13th Annual CTOS Meeting The Connective Tissue Oncology Society (CTOS) is an international group comprised of physicians and scientists with a primary interest in the tumors of connective tissues. The goal of the society is to advance the care of patients with connective tissue tumors and to increase knowledge of all aspects of the biology of these tumors, including basic and clinical research. Important dates related to the 13th annual meeting: April 1, 2007 - Submission of abstracts opens online; May 1, 2007 - Registration for meeting and hotel reservations opens online; June 30, 2007 - deadline for submission of abstracts. The 13th Annual CTOS Meeting will take place November 1-3, 2007 in Seattle, Washington at the Fairmont Olympic Hotel
May 2007 12,402 Steps to Cure Sarcoma Walk
The Jennifer Hunter Yates Sarcoma
Foundation's 12,402 Steps to Cure Sarcoma Walk will be held on
Saturday, May 5, 2007 at the Hudson High School Football Field in
Hudson, Massachusetts. The walk, which will start at 10:00 a.m., is
about 6.1 miles in length (although shorter options are available). The
Jennifer Hunter Yates Sarcoma Foundation is sponsoring the walk. Funds
raised for the walk are used at the Massachusetts General Hospital Cancer
Center for sarcoma research, the Sarcoma Education Network, and sarcoma
patient and family support. If you are interested in learning more, you can
e-mail Susan Erickson at or call her at
Dragon Slayer 5k Run and Walk This 5k run and walk will be held in Portland, Oregon on May 6, 2007. This event will benefit the NW Sarcoma Foundation while raising awareness of sarcoma. For more information, contact Melissa Hill or visit the NW Sarcoma Foundation's website for more details.
Dragon Slayer Bike, Hike, or Trike A fun 5k event allowing you to choose if you want to run, walk or ride! This event will be held in Seattle, Washington on May 19, 2007 and will raise funds for the NW Sarcoma Foundation while raising awareness of sarcoma. For more information, contact Melissa Hill or visit the NW Sarcoma Foundation's website for more details.
Gold Ribbon Ride The Brian Morden Foundation's third annual Team Gold Ribbon Ride — an event to raise awareness and funds for the fight against childhood cancer — will be held on Saturday, May 26, 2007 in the Fort Roberdeau area near Altoona, Pennsylvania. The event is open to everyone: families, individuals, young and old, professionals and amateur cyclists, walkers, runners, spectators, and well-wishers. For more information, please see the BMF's website.
June 2007 American Society of Clinical Oncology 43rd Annual Meeting The 43rd ASCO Annual Meeting will take place on June 1-5, 2007 in Chicago, Illinois. The ASCO Annual Meeting is considered one of the premier educational and scientific events in the oncology community. The 2006 Meeting in Atlanta attracted more than 29,000 attendees from all over the world. Click here to find additional information about the June 2007 meeting
July 2007 Team Sarcoma 2007 Initiative The Team Sarcoma 2007 Initiative is an internationally coordinated set of events to raise awareness of sarcoma and raise funds for sarcoma research. The 2007 Initiative will include "Sarcoma Update" lectures that will be given in various cities around the world in June 2007 and the Team Sarcoma 2007 Bike Tour which will be held in the Lake Champlain area in Vermont and New York during July 14-21, 2007. Think of the Team Sarcoma 2007 Bike Tour as an “International Bike, Run, Walk, and Swim for Sarcoma Awareness”. The members of Team Sarcoma 2007 in Burlington will be joined by people who will cycle, run, walk, hike, or swim in the countries where they live on one or more of the days that the members of Team Sarcoma 2007 are cycling in Vermont. These people will form local “Team Sarcomas” in their home countries around the globe. If you are interested in forming one of the local Team Sarcomas, please contact us. In order to give the planners of local Team Sarcomas more flexibility in planning their activities, the official dates of “International Bike, Run, Walk, and Swim for Sarcoma Awareness” will be July 14-22, 2007.
Rein in Sarcoma 2007 The Karen Wycoff Rein in Sarcoma Fund's "Rein In Sarcoma" will take place on July 23, 2007 in Minnesota.
V3N6 ESUN Copyright © 2006 Liddy Shriver Sarcoma Initiative.
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