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Spring 2000 Volume 3, Issue 8:
News & Notes - Spring 2000
IMFers in the Oval Office

(l-r) President Clinton, Marlene Zimmerman, Hillary Rodham Clinton, and Fred M. Zimmerman at the White House

Marlene Zimmerman, a Beverly Hills artist diagnosed with myeloma in 1997, crafted a one-of-a-kind menorah replicating the Breed Street Synagogue in East Los Angeles that Mrs. Clinton visited in December of 1998 in an effort to have it designated an historical landmark. After the menorah was sent to the White House, Mrs. Zimmerman and her family received an invitation to join the Clintons in the Oval Office on the first night of Hanukkah.

In addition, Home & Garden Television included Mrs. Zimmerman as part of their Christmas at the White House holiday special.

Bisphosphonates Reimbursements Update

Provisions to include bisphosphonates, the bone strengthening class of drugs that include Aredia, were included in the Omnibus legislation signed by President Clinton at the end of the last session of Congress in November 1999. Medicare reimbursement rates for the drugs will remain unchanged and the waiver will last at least three years. Please see the previous issue of Myeloma Today for further background.

Veterans Administration Compensation

Multiple myeloma is presumed by VA to be service-related for compensation purposes for veterans exposed to Agent Orange and other herbicides. Military personnel who served in Vietnam anytime between January 9, 1962 and May 5, 1975 are presumed to have been exposed to herbicides.

The IMF is Moving

We are pleased to announce the opening of our new office. For the past nine years, the IMF has been operating out of very cramped quarters and we are excited about our new spacious offices. As of April 20th, the IMF’s new home will be:

International Myeloma Foundation
12650 Riverside Drive, Suite 206
Studio City, CA 91607
Telephone: (818) 487-7455

We would like to upgrade some of our equipment and are asking for donations of iMac computers and compatible laser printers. If you are in a position to make this wish come true, please contact Suzanne Battaglia at the IMF (800) 452-2873.

Cancer Pain Initiative

Each state in the U.S. has a ”Cancer Pain Initiative” office. These offices provide helpful information and physician contacts. Call the American Cancer Society toll-free at (800) 227-2345 to locate this resource in your state.

New MM Support Group In New York

The new myeloma support group will meet at St. Vincent’s Comprehensive Cancer Center in New York City on the first Thursday of every month at 7PM. The first meeting took place on March 2nd. Although the group will be run primarily by patients, social worker Bill McDermott will help coordinate the meetings. He can be reached at (212) 604-6097.

National Cancer Survivors Day:  A Celebration Of Life

Cancer survivors, family members, friends, oncology professionals and volunteers will join in the 13th annual nationwide celebration of life to be held throughout North America on Sunday, June 4th. NCSD is the world’s largest cancer survivor event, held simultaneously in more than 700 communities across America.

The participants gather to celebrate life, and to call attention to survivorship issues such as affordable and accessible healthcare, workplace discrimination, and emotional and physical recovery.

Join us in honoring the courage and perseverance of America’s 8.4 million cancer survivors. For the location of events in your area, please contact the NCSD Foundation at (615) 794-3006 or e-mail NCSD at ncsd@aol.com.

Eating Hints For Cancer Patients

The National Cancer Institute has recently revised a free publication for cancer patients and their caretakers. The booklet is titled Eating Hints for Cancer Patients: Before, During & After Treatment. It can be obtained by calling the NCI toll-free at (800) 422-6237. Persons with TTY equipment can dial (800) 332-8615.

IMF Media Search Continues

Thanks to all of you who responded to our request for patient stories. As a result, IMFer Janet Besse was recently interviewed for an article by a New York paper, The Times Herald Record.

Putting “a face” on myeloma helps get our stories out, reaches newly diagnosed patients and helps us increase research funding. We encourage you to continue to submit your stories, so the next time we get a media call from your area, you can be contacted for an interview.

If you have myeloma and are interested in taking part, please mail your story – of 500 words or less – to Suzanne Battaglia at the IMF (or e-mail it to sbattaglia@myeloma.org). Be sure to include your name, address and phone number, as well as the following:

  • your age;
  • family status (i.e. married, number and ages of children, etc.);
  • when you were diagnosed;
  • your level of awareness of myeloma at time of diagnosis;
  • what treatment you have received so far;
  • current status of your myeloma (i.e. bone/kidney involvement, etc.
  • family history of myeloma, if any.

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