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January 8, 2003 Myeloma Minute

What's News:

  • If you have not already registered for the Los Angeles Patient & Family Seminar on January 24-25, 2003, you'd better hurry. There are very few spaces left. Anyone who has ever been to a P&FS knows how valuable they are, not only for the expert opinions from the faculty, but for the opportunity to meet and talk with others. Jean-Luc Harousseau, head of the Department of Clinical Hematology and Vice President of the French Society of Hematology, will be a faculty speaker .
  • A Message from the National Cancer Institute:


    The National Cancer Institute, part of the National Institutes of Health, is currently developing educational materials for cancer patients & their families. As part of this effort, we are conducting a series of focus groups with the adult partners of cancer survivors. Participants will take part in one 90-minute telephone focus group and will be paid for their time.

    To make sure we are reaching all people affected by cancer, we are still looking for the following types of individuals:

    • African American, Latino, Asian American, Pacific Islander or Native American men - age 21-55
    • African American, Latina, Asian American, Pacific Islander or Native American women - over age 55
    • All races & ethnicities, men - over age 55

If the following statements apply to you, we are interested in speaking with you further:

  • Your spouse or partner is a cancer survivor.
  • You have not personally received cancer treatment in the last six months.
  • You are not a physician, nurse or other health professional.

Your opinion is important to us – and we would value your input. If you are interested in participating in this project, please call Larry Glade at Blarry House Research (866-409-7953 toll free) or e-mail him larryg@blarry.com by January 30, 2003.

Thank you for your assistance.

  • Update 2003: Cancer Research and Treatment
    A free public education program

    The public is invited to attend Update 2003: Cancer Research and Treatment featuring presentations, in non-technical language, by a panel of distinguished cancer experts from Memorial Sloan-Kettering Cancer Center, Columbia Presbyterian Medical Center, the Cancer Institute of New Jersey, Aventis Pharmaceuticals, and the National Cancer Institute. Subjects to be discussed will include:

    • Progress in the war on cancer
    • Advances in 'targeted cancer drugs'
    • Progress in 'immunotherapy'
    • The clinical trial process
    • Innovative surgical procedures
    • Breakthroughs in diagnostic tools

Update 2003 will be conducted on Saturday, February 8, 2003, 9:00 AM-3:00 PM, at the Embassy Suites-Hilton Hotel, 102 North End Avenue (corner of Vesey Street and North End Avenue), New York City. The event will begin with presentations by the speakers followed by a luncheon and an afternoon question-answer session with the panelists.

Admission to the program, including luncheon, is free with advanced registration and tickets required. Register early, as seating is limited.

To register and receive tickets, please contact SynCure:

Telephone (toll free): 1-866– SYNCURE (796-2873)
E-Mail: syncureinfo@syncure.org
Web address: www.syncure.org

What's New in Myeloma Research:

Advocacy Update:
  • Congress Moves to Finish Old Business
    As Morton Kondracke wrote in the December 16, 2002 edition of Roll Call, "With NIH caught up in Congress' failure to pass most fiscal 2003 appropriations bills this year, it's even possible that research funding will crash into a wall in a month or two."
  • Greg Brozeit Moves
    IMF advocacy consultant Greg Brozeit has moved with his wife Romi and son Max to Fairlawn, OH, a suburb of Akron, OH. He can still be reached at greg.brozeit@worldnet.att.net. His new contact information is:

Greg Brozeit
567 Hampshire Road
Fairlawn, OH 44333
330-865-0046 office
330-865-0064 fax

Quality of Life Update:
  • Coachella Valley Area Multiple Myeloma Support Group Meeting
    Their next meeting will be January 16th. Time is 4:00-6:00 pm at the Northern Trust Bank at the corner of Frank Sinatra Drive and Highway 111.

    The purpose of the meeting is to present an interactive session which will focus on health issues of particular importance to individuals with Multiple Myeloma. Spouses, caregivers, loved ones and friends are invited to attend.

    All Multiple Myeloma Survivors in the Coachella Valley are encouraged to attend this important meeting.

If you have a topic of particular interest that you would like us to feature, if you are starting a support group, or if you are in a support group that is doing something to make a real difference in the lives of mutiple myeloma patients and their families and friends, let us know.

Items of Interest:
  • NexCura Cancer Profiler
    The Cancer Profiler is a free service (no hidden fees or charges). Its tools provide you with information specific to your cancer diagnosis to help you make more informed treatment decisions along with your physician.
  • Expert Opinions on Multiple Myeloma
    A multimedia, CME-accredited program for physicians with the chance to see world-renowned myeloma specialists sharing their knowledge, discussing treatment choices, and comparing their perspectives on controversial issues in multiple myeloma and related diseases.
  • Myeloma Matrix
    The Myeloma Matrix provides updated information about drugs beginning with pre-clinical developments and tracks drugs as they proceed through Phases I – III of clinical trials, drugs that have been FDA approved, and information on trials that are being conducted by NCI- sponsored cooperative groups as well as other myeloma study groups. The online version is updated regularly. If you would like to have a printed copy, call the toll-free hotline (800) 452-2873.
  • Bank On A Cure™
    The IMF is pleased to announce the launch of Bank On A Cure™, a groundbreaking international collaborative effort to establish a method to find new treatments while customizing care for current patients.
  • Myeloma At The Movies
    It has been our goal to bring our Patient & Family Seminars to people around the country who might not be able to attend an actual meeting, so we have set up a video lending library....

Important Dates to Remember:
  • Little Rock Community Workshop
    Saturday, March 22, 2003
    University of Arkansas, Medical Sciences
    Education III Bldg., - Pauly Auditorium
    4301 W. Markham Street
    Little Rock, AR 72205
  • Dallas Community Workshop
    Saturday, November 8, 2003
    Baylor University Medical Center
    Davis Auditorium - 17 Roberts Hospital
    3500 Gaston Avenue
    Dallas, Tx

Clinical Trials:

To help you find trials currently open for enrollment, the IMF has entered into partnerships with CenterWatch and EmergingMed. Through these services, you can match a trial to your particular patient profile (i.e., stage of disease, previous treatment, how well you are able to carry out the activities of daily living, etc.) and by doing so, increase your chances of being eligible. You can also learn more about clinical trials by reviewing material from the National Cancer Institute.

Exciting Opportunities:

  • Multiple Myeloma Quilt of Courage

    The second quilt is now being pieced together, and we hope to have it up on the web by the end of January. The third quilt is reserved and so we are taking orders for the 4th and final quilt.

Help Us Help Others...
As a non-profit organization, the IMF is completely dependent on the support of our members. Please consider showing your support by making a tax-deductible donation today. Donations in honor of a friend or family member make great gifts and are a wonderful way to celebrate a special occasion. You can donate online or by calling the IMF at (800) 452-CURE. We sincerely thank you for your support.

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