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Fall 1999 Volume 3, Issue 6:
News & Notes - Fall 1999
IMF Media Search

The IMF has been working hard to raise awareness about myeloma. Putting "a face" on the disease gets our story out, reaches newly diagnosed patients and helps increase research funding. We work with the press in conjunction with the IMF Patient & Family Seminars, clinical meetings and fundraisers. Media exposure prior to the Atlanta IMF Patient & Family Seminar was, in part, responsible for the huge attendance Ð over 500 patients and family members! We continue to seek out patients who might be candidates for a media story. If you are a myeloma patient interested in taking part, please send us your story (of 500 words or less) and include the following:

  • Your age;
  • Family status (i.e., husband, father, number and ages of children, etc.);
  • Your occupation;
  • When you were diagnosed;
  • Your awareness of myeloma prior to your diagnosis; The current status of your myeloma (i.e., bone/kidney involvement, etc.);
  • Any family history of myeloma;
  • The main treatment you have received.

Please be sure to include your name, address and phone number and mail or fax your story to Suzanne Battaglia at the IMF (e-mail: slbattaglia@myeloma.org).

Support for Teens

Cancer Care has developed a telephone support group for adolescents whose parents have been diagnosed with cancer. This group brings together teens aged 14-18 with a professional social worker via the telephone, to discuss the challenges of having a parent with cancer. The added responsibility of caring for younger siblings and providing personal care to their ailing parent can be overwhelming. This support group focuses on helping teenagers cope with balancing new responsibilities with existing ones, and dealing with the emotional roller coaster inherent in being a teenager, let alone a teenager whose parent has cancer. For more information, call the Cancer Care Counseling Line at (800) 813-4673.

Symposium on Skeletal Complications

The Paget Foundation, the National Cancer Institute and the Pennsylvania State University College of Medicine & Cancer Center will jointly sponsor the Second North American Symposium on Skeletal Complications of Malignancy in Montreal, Canada on October 15-16, 1999 .

Washington D.C. Area Seminar

The Washington, DC area IMF Patient & Family Seminar will be held at the Ritz Carlton in Tyson Corner, VA. The seminar will take place January 28-29, 2000. Invited faculty includes Drs. Brian Durie, Robert Kyle, James Berenson, Bill Dalton, and Bart Barlogie. The Director of the National Cancer Intitute, Dr. Richard D. Klausner, will be the special guest speaker addressing the topic of new directions in cancer research. Registration will commence in October. For information, e-mail TheIMF@myeloma.org or call Renee Rape at (800) 452-2873.

New Internet Discussion Group

ÒMyeloma-DRÓ is an international Internet discussion group for physicians and allied health professionals caring for patients with multiple myeloma, smoldering myeloma, solitary plasmacytomas and MGUS, as well as other bone marrow related disorders. From leading experts in the field to local oncologists, ÒMyeloma-DRÓ is a resource to discuss current diagnostic methods, clinical treatments, follow-up tracking, research, clinical trials, and advances in the field. ÒMyeloma-DRÓ is jointly sponsored by the IMF and Association of Cancer Online Resources (ACOR). To join, visit http://www.acor.org/myeloma-dr.html or send an e-mail with your name and e-mail address to myeloma-dr-list@listserv.acor.org

Myeloma 200 Progress Report

Myeloma 200 Ð Closer to a Cure Fundraising Campaign has now raised over $315,000 for myeloma research. Members continue to find creative ways to support the campaign. Here are some examples:

Susan Meckley of Orlando, FL raised $640 through making candles. Susan Sears of Grand Blank, MI raised over $300 through a can drive in honor of her father, Roger Lamoureux Sr, then surprised him with what she did on his birthday. ÒI didnÕt want to give him a material gift,Ó she said. ÒI wanted it to be something from the heart that would show him how much he means to me. This donation is a gift that will benefit everyone.Ó

We thank all of you for your continued support of Myeloma 200. If you would like to participate, please contact Romi Pfister at the IMF.

Donation Alert

If you are making an honorary donation that needs to be processed in time for a birthday, anniversary or special holiday, please mark the outside of your envelope Òprocess immediatelyÓ. This will alert us that your donation is time-sensitive. Otherwise, your donation will be processed in the order it was received.

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