Abstracts by Bruce Shriver

Educational and Informative Teleconferences

Beyond the Cure's Teleconferences. Beyond the Cure is a program of the National Children's Cancer Society. It was created for survivors of childhood cancer. Current research indicates that over two-thirds of childhood cancer survivors experience at least one "late effect" as a result of their disease or treatment. Late effects, the results of diagnosis and treatments, can vary in severity, but may include secondary malignancies, as well as problems associated with heart, endocrine, sensory or reproductive systems. Cancer also affects a person emotionally, developmentally, cognitively, spiritually and socially. Beyond the Cure program hosts teleconferences on a variety issues and concerns experienced by survivors and their families after completion of treatment for childhood cancer. These teleconferences provide you with current information from leading national experts without leaving your home or office. The list of upcoming topics can be viewed by clicking here.

CancerCare Connect™ Telephone Education Workshops (TEWs). TEWs are free educational seminars “for people living with cancer, their families, friends, and healthcare professionals. The Workshops are a way for people across the country and internationally to learn about cancer-related issues from the convenience of their home or office. Leading experts in oncology provide the most up-to-date information on the telephone. All you need is a telephone to participate in a Telephone Education Workshop. Participation is free; no phone charges apply.  Pre-registration, at least one week in advance of the Workshop, is required.” The TEWs for February through June 2006 are listed on the CancerCare Connect TEW website.

Travel Assistance

	Air Care Alliance: The Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer pilots are dedicated to community service. The ACA website lists all the ACA groups whose volunteers perform public benefit flying for health care, patient transport, disaster relief, environmental support, and other missions of public service. Patient Transport by aircraft is provided for free by many volunteer pilot organizations. Phone: 888-260-9707 or 918-745-0384.
	Angel Flight America: Angel Flight America--a national network of seven autonomous regional members--arranges free flights of hope and healing by transporting patients and their families in private planes to hospitals for medical treatment. They also provide free flights in the event of a national crisis or whenever there is a compelling human need. Angel Flight exists to arrange free long distance access, ultimately removing the financial burden of transportation as an obstacle in receiving specialized medical evaluation, diagnosis or treatment for any mobile child or adult. Phone 800-446-1231.
	Angel Flight Europe: Angel Flight Europe is a charitable organization which arranges free long distance transportation in non-emergency medical situations. No fees are charged to the patient, the insurance company or any other entity for the transport. Angel Flight Europe serves the European Union and Switzerland. Typical candidates for Angel Flight transport include cancer patients, sufferers of rare diseases, and handicapped persons who need transport to medical care. We would help reunite families stranded abroad after a medical emergency (our first mission in Europe was a repatriation case) or bring children and teenagers to summer camps for burn survivors, cancer patients or other hospice care. In general, patients must be ambulatory (exceptions can be made for children and other special circumstances) and must always have their physician's release for travel in light aircraft. A declaration of financial need is also required. Angel Flight does not provide air ambulance service.
	Corporate Angel Network: The Corporate Angel Network arranges free travel within the United States on corporate jets for cancer patients, bone marrow donors and bone marrow recipients, as long as they: (a) Travel to or from an approved (*) cancer treatment center; (b) Are able to walk up and down the steps to a private plane without assistance; (c) Do not require oxygen, IV or any other form of life support during the flight. (*) Recognized cancer treatment centers are listed with the American College of Surgeons and/or the National Institutes of Health. Phone: 866-328-1313.
	National Patient Travel Center (NPTC): The National Patient Air Transport HELPLINE of the NPTC provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network. The National Patient Air Transport HELPLINE's goal is to "ensure that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of medical air transportation."
	Delta Skywish Program: The Delta Skywish program provides Delta tickets for a cancer patient and a caregiver to go to and from cancer treatment or oncologist appointments. It is administered by the United Way in Atlanta. Anyone can donate miles in 5000 minimum increments to a specific person or to a general fund. They take the miles and add ones they get and provide tickets.   1-888-675-1405 is for the administrators of Mercy Medical airlift.

Angiogenesis Resources

	The Angiogenesis Foundation has an useful website. As part of its mission, the Angiogenesis Foundation provides material to educate patients and their families about angiogenesis and its new treatments for many serious diseases, including cancer. Through its website and programs throughout the United States, Europe, and Asia, they are providing patients and their families with up-to-date, expert, and practical information about new angiogenesis medicines.
	“What is angiogenesis and how does it play a role in cancer treatment?” is a brief, useful introduction to key ideas and appeared in an earlier issue of ESUN.
	Understanding Angiogenesis is one of the National Cancer Institute’s “Science Behind the News” tutorials. It was developed by Lewis Kleinsmith, Donna Kerrigan, and Jeanne Kelly. It is a series of 27 slides that provides an illustrated description of angiogenesis and its importance in cancer research.
	Some excellent videos about the drug Endostatin featuring Dr. Folkman can be found on the PBS Nova series website by clicking here. There are also a number of videos on Dr. Falkman’s website at Harvard.
	Several recently published and interesting articles are also available: “Circulating angiogenic factor levels correlate with extent of disease and risk of recurrence in patients with soft tissue sarcoma” can be accessed by clicking here. “Advances in understanding angiogenesis through molecular studies” can be accessed by clicking here; “Angiogenesis as a therapeutic target” can be accessed by clicking here.  "Angiogenesis Inhibitors and Hypertension: An Emerging Issue" can be accessed by clicking here.
	Angiogenesis: The Impact of Vascular Endothelial Growth Factor (VEGF). You can download a copy of a "Signaling Pathways" poster from this page on the Genentech BioOncology website.

Lainie's Angels – Training Parent Advocates

Lainie's Angels is a non-profit foundation started by the parents of Lainie Afendoulis, a twelve-year-old girl who recently passed away after a two-year battle with Ewing's Sarcoma. The main purpose of Lainie's Angels is to continue to train and place Parent Advocates in hospitals around the United States. Parent Advocates are parents or family members of terminally ill child cancer victims who make themselves available as compassionate, knowledgeable resources to other families going through the illness of a child. Lainie’s Angels, still in its formative years, has already made an impact through partnerships with the University of Rochester Medical Center and the Children’s Memorial Hospital of Chicago and for parents and families in the New York and New Jersey area.

Pediatric Oncology Resource Center 

The Pediatric Oncology Resource Center has an extensive website for parents, friends, and families of children who have or had childhood cancer. This resource center was created by and for people who know young people who are recovering from cancer. They offer a good deal of information on family support, various cancers, treatment issues, and more. Check out the extensive listing of college scholarship opportunities for childhood cancer survivors. You should also check out the scholarship information on the Ulman Cancer Fund for Young Adults website, by clicking here.

The United Devices Cancer Research Project 

The United Devices Cancer Research Project is attempting to advance research to uncover new cancer drugs through the combination of chemistry, computers, specialized software, and organizations and individuals who are committed to fighting cancer. This project is looking for people to volunteer their PCs to help process molecular research being conducted by the Department of Chemistry at the University of Oxford in England and the National Foundation for Cancer Research. To participate, you simply download a very small, no cost, non-invasive software program that works like a screensaver: it runs when your computer isn't being used, and processes research until you need your machine. Your computer never leaves your desk, and the project never interrupts your usual PC use. Click here to find out more details.

Lotsa Helping Hands

Lotsa Helping Hands was created after "witnessing four years of awe-inspiring community support and response to a family member's serious medical crisis." Lotsa Helping Hands is a simple way for friends, family, colleagues, and neighbors to assist loved ones in need. It's an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during a crisis. Learn more about how it works by visiting the above website.

BioMed Central's "Open Access" Online Journals

BioMed Central (BMC) is an independent publishing house that provides open access to peer-reviewed biomedical research. The articles published by BioMed Central are made "freely and permanently accessible online immediately upon publication." All research articles in BioMed Central's journals are peer reviewed. According to their website, "The detailed peer-review policy of each journal is the responsibility of the journal editor(s) concerned. Many journals operate traditional anonymous peer review. Others, including the medical BMC-series titles, operate 'open peer review', in which reviewers are asked to sign their reviews. For these titles, the pre-publication history of each paper (including submitted versions, reviewers' reports and authors' responses) is linked to from the published article." BioMed Central currently publishes and amazing 130 journals!

BMC Complementary and Alternative Medicine

BMC Complementary and Alternative Medicine is an open access, peer-reviewed journal published by BioMed Central. All articles in the journal are immediately and permanently available online for all to read and use free of charge. Here is the abstract of a sample article. Yuri Clement and his co-authors from the Faculty of Medical Sciences, The University of the West Indies, Trinidad and Tobago state, in their article, "A gap between acceptance and knowledge of herbal remedies by physicians: The need for educational intervention", that "The unprecedented global increase in the use of herbal remedies is set to continue apace well into the foreseeable future. This raises important public health concerns, especially as it relates to safety issues including adverse effects and herb-drug interactions. Most Western-trained physicians are ignorant of the risks and benefits of this healthcare modality and assessment of acceptance and knowledge would identify appropriate intervention strategies to improve physician-patient communication in this area." This article is available online at the above link.

The Impact Factor revisited

In their article, "The Impact Factor Revisited, Dong , Loh  and Mondry of the Medical Statistics and Epidemiology Group, Bioinformatics Institute, BMRC, A*STAR, Singapore, state, "The number of scientific journals has become so large that individuals, institutions and institutional libraries cannot completely store their physical content. In order to prioritize the choice of quality information sources, librarians and scientists are in need of reliable decision aids. The "impact factor" (IF) is the most commonly used assessment aid for deciding which journals should receive a scholarly submission or attention from research readership. It is also an often misunderstood tool. This narrative review explains how the IF is calculated, how bias is introduced into the calculation, which questions the IF can or cannot answer, and how different professional groups can benefit from IF use." Their article appeared in Biomedical Digital Libraries 2005, 2:7 and can be found in its entirety at the above link.

The GIST Cancer Research Fund (GCRF)

GCRF has announced dates for their 2006 Research Grant presentations and extended an invitation to all GIST cancer patients, their families, caregivers and friends to attend. With the input from the doctors and researchers present, these roundtable type discussions provide an important and in depth GIST educational experience. The GCRF presentations will kick off at Memorial Sloan Kettering Cancer Center (MSKCC) in New York City, NY on March 29th at 3:00 PM. Dr. Bob Maki, Dr. Ron De Matteo, Dr. David D'Adamo, Dr. Cristine Antonescu, and Dr Jimmie Holland are expected to attend. Another presentation will take place on April 5th at noon at the Fox Chase Cancer Center (FCCC) in Philadelphia, PA.  Dr. Meg Von Meheren, Dr. Andy Godwin, Monica Davey, and various Research Fellows involved with GIST are among those anticipated to be present from FCCC for this luncheon presentation. The Oregon Health Science University - Cancer Institute (OHSU) in Portland, OR presentation will again be a two day event, which will start with Dr. Brian Druker (the person who put GIST & Gleevec together) at 3:00 PM on May 3rd. The following morning (May 4th) at OHSU will begin with a breakfast presentation that will include such GIST specialists such as Dr. Chuck Blanke, Dr. Chris Corless, Dr. Mike Heinrich and other GIST professionals from OHSU. Arrangements for a date for the GCRF presentation at  the Dana Farber Cancer Institute (DFCI) in Boston, MA is currently in the works and will be announced as soon as it is scheduled.  Others are being considered by the GCRF for additional GIST Research Grants.

Steps to Cure Sarcoma Walk: May 6, 2006

The second annual Steps to Cure Sarcoma Walk will be held in Hudson, Massachusetts on Saturday, May 6, 2006 at 10:00 a.m.  The 12,402 step walk ( approximately 6.1 miles) is sponsored by the Jennifer Hunter Yates Sarcoma Foundation, Inc. Funds raised by this event will benefit the Jennifer Hunter Yates Sarcoma Fund at Massachusetts General Hospital (MGH). This fund supports sarcoma research, sarcoma education, and sarcoma family support at MGH. Last year’s event raised $75,000.00 for this fund. For more information about how to form a team to participate in this walk, either e-mail Susan or visit the Jennifer Hunter Yates Sarcoma Foundation website: “Every Step Counts in the Quest for a Cure.”

A Lion in the House: About the Series and the Campaign

"You know you are truly alive when you are living among lions"—Isak Denesen. "Coming to Independent Lens on PBS June 21 and 22, 2006, "A Lion in the House" offers an unprecedented look at the cancer journeys of five young people and their families over a six-year period. Award-winning filmmakers Steven Bognar and Julia Reichert bring audiences face to face with the uncertainty of the entire cancer experience and its rippling effects on family, community and professional caregivers. At the core of "A Lion in the House" is the resilience, courage and wisdom of five extraordinary young people." You require the QuickTime player to view the series trailer. "The national broadcast of "A Lion in the House" seeks to galvanize public attention around childhood cancer. The ITVS community engagement campaign brings to this effort a committed group of national partners and a broad array of stakeholders to spur a national dialogue, support families and caregivers and inspire local and regional action. The campaign seeks to build bridges between families in need and communities of support." 

Additional bits and pieces  

	Copies of many of the presentations that were given at the “British Sarcoma Group Conference 2005” can be downloaded at the BSG website.
	Copies of many of the presentations that were given at the Connective Tissue Oncology Society (CTOS) meeting in November 2005 can be downloaded at the CTOS website.
	Using Single-Agent Therapy in Adult Patients with Advanced Soft Tissue Sarcoma Can Still Be Considered Standard Care
	ET-743: A Novel Agent with Activity in Soft Tissue Sarcomas
	Post-cancer care found deficient: Survivors need to know what's next, report says
	ECCO 13 - Sunitinib prolongs survival in GIST patients after imatinib mesylate failure
	Nalbuphine a Safe, Effective Long-Term Therapy for Severe Chronic Pain
	‘Epigenetic' Changes Come Before Mutations In Cancer
	Chemotherapy and You: A Guide to Self-Help During Cancer Treatment
	Current issue of CURE magazine (see, in particular, "Cancer's Molecular Machinery" and "The Future of Cancer Research")
	Patient Education Booklet Available from NCI “Providing Your Tissue for Research: What You Need To Know"

V3N1 ESUN Copyright © 2006 Liddy Shriver Sarcoma Initiative.