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WHAT'S NEWS
  • Advocacy Update: House Leadership Presses for Budget Bill Opposed by Health Advocates
    House Majority Leader John Boehner (R-OH) has indicated that he will schedule a full vote on a House Budget Resolution package as early as tomorrow, Thursday, May 11, 2006. Advocates are encouraged to contact their members of Congress to urge them to oppose any Budget Resolution legislation that does not include at least $7.2 billion more for domestic funding—including cancer research—than the President requested in his budget proposal.

  • National Oncologic PET Registry Now Open
    The National Oncologic PET Registry (NOPR) opened May 8th to ensure access to Medicare reimbursement for certain types of positron emission tomography (PET) scans. You may recall Dr. Durie's statement in February of last year: "[The IMF has] worked hard for reimbursement because we believe PET scanning is an important tool for diagnostic evaluation, staging, and monitoring for myeloma. This is a very encouraging decision by Medicare, and an important step forward for myeloma patients."

  • Medicare Deadline Reminder
    If you are eligible and intend to apply for the new Medicare Part D prescription drug benefit, May 15, 2006 is the deadline. After the deadline, enrollment will remain closed until November 15-December 31, 2006, with new programs taking effect on January 1, 2007.


  • Cancer drugs in Ontario, Canada may go to those who can pay
    The province's cancer centres are considering making approved drugs not covered by OHIP available to patients willing to pay. Read Ontario Health Minister seconds patient-pay plan for expensive cancer drugs from the Toronto Globe and Mail, which includes a quote from Carolyn Henry, group leader of the London and District Myeloma Support Group. Read also Paying for cancer drugs, a letter to the editor from Hamilton and District MM Support Group leader Laura McCallum. (Both articles from the Hamilton Spectator)

  • Cancer Resistance Found to Be Transferable in Mice
    In 1999 scientists discovered a mutant mouse with the ability to ward off aggressive cancers. Bred with a female, this mighty mouse passed on his cancer resistance to roughly 40 percent of his offspring. No matter how many times the researchers challenged the immune systems of these mice with levels of cancer cells millions of times stronger than those lethal to regular mice, they proved incapable of developing cancer. (from Scientific American)

  • Support Group Leaders' Retreat Starts May 19th in Scottsdale, Arizona
    A trip to the sun is in store for the amazing IMFers who keep our support groups running. A chance to talk and relax amid the red desert rocks. A chance to share stories; solve problems. A chance for a little support for themselves. If you are a support group leader, and you are not going to the retreat this year, think about taking some time for yourself next year. And stay tuned for a report from Scottsdale.

    Third Issue of AMEN's Hebrew-language Newsletter Published
    AMEN is celebrating its first anniversary on Mary 25. Its mission is to benefit the welfare of myeloma patients in Israel, improve their quality of life, and centralize information on the disease, treatments, meds and research.

  • Mother's Day is Sunday, May 14th
    She bathed you, fed you, and kissed your boo boos. And let's not even mention how long she was in labor before you decided to enter the world. If you are planning to honor your mother with a gift this Sunday, why not give twice? Buy a gift from your favorite e-tailer through the special IMF links and every purchase will generate a donation to support the programs of the IMF.

  • Robert A. Kyle Lifetime Achievement Award Update
    Next week, the IMF heads to Washington, D.C. to honor Dr. Brian Durie with the 4th Annual Robert A. Kyle Lifetime Achievement Award. Please join us, and our esteemed speakers, on May 16th at the historic National Press Club. Click here for details. Dr. Durie is being honored for his extensive body of work, much of it focused on the proper assessment of patients to ensure they receive the most effective care. Dr. Durie co-created the Durie/Salmon Myeloma Staging System, and co-developed, with the International Working Group, the International Staging System. He has written over 400 research papers, sixteen book chapters, and five books--work which has had an impact on myeloma treatment around the world. The IMF's Kyle Award Dinner promises to be an incredible evening, but none of it would be possible without our generous sponsors, including Darlene & Walter Reinhold, Celgene Corporation, Millennium Pharmaceuticals.


    WHAT'S NEW IN RESEARCH

    If you would like more information about any clinical trial, you can call the IMF Hotline at 800-452-CURE. The Myeloma Matrix has a current list of all myeloma trials from pre-clinical to recently FDA approved. If you would like to browse trials currently open for enrollment, visit the Clinical Trials page of the IMF web site. Among the links, you will find EmergingMed, with whom the IMF has entered into a partnership to assist you in matching trials 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 materials from the National Cancer Institute.


    UPCOMING SEMINARS AND CLINICAL CONFERENCES

    First Anniversary of AMEN
    May 25, 2006

    Tel Aviv, Israel
    Seminário para Pacientes & Familiares IMF LA
    June 24, 2006
    Rio de Janeiro, Brasil
    Multiple Strategies for Treating Myeloma: Case Discussions
    Register now for this FREE case-based CME dinner activity for physicians coming to an area near you: Thursday, July 6, 2006, in Portland, Oregon and Thursday, August 3, 2006 in Philadelphia, Pennsylvania.
    Portland Patient & Family Seminar
    July 7-8, 2006

    Portland, Oregon
    Seminário para Pacientes & Familiares IMF LA
    July 31, 2006
    São Paulo/SP, Brasil
    Philadelphia Patient & Family Seminar
    August 4-5, 2006

    Philadelphia, Pennsylvania
    Seminário para Pacientes & Familiares IMF LA
    September 30, 2006
    Caracas, Venezuela

    UPCOMING EVENTS

    The IMF's comprehensive "How-to-FUNdraise" guide is what you need if you're thinking about fundraising in your community but don't know where to start. The guide contains the A - Z of fundraising ideas--like running in a local marathon and asking for donations per mile for myeloma; having a summer BBQ, where you charge a cover and hold a raffle; asking your local supermarket to donate wine and cheese, then selling tickets and having a cocktail party--as well as tips and guidelines for success. Check out the FUNdraisers below:

    The Stratford Runner
    Sheldon is running 1000 kilometers across Canada to raise money to support myeloma research.

    Ralph Ferrizzi Golf Tournament
    May 20 2006

    Easton, Pennsylvania


    7th Annual JC Golf Tournament
    May 20, 2006

    Minneapolis, Minnesota

    Leona Cravotta Golf Tournament
    May 20, 2006

    Portland, Oregon

    Terry DuBois’ Birthday Bash for Myeloma
    June 10, 2006
    Ellsworth, Wisconsin

    5th Annual Multiple Musicians Against Multiple Myeloma
    July 9, 2006

    Sea Cliff, New York

    6th Annual Wamp Swim-a-thon
    July 22, 2006
    West Hartford, CT
    • Mail for the Cure Extended
      Many of you requested envelopes to participate in our Mail For The Cure campaign, but were unable to send them out by the end of the year. So we have decided to extend the program for another six months. So far, the campaign has raised over $8,000 to support the IMF's programs, and we know there will be a lot more coming in judging by your requests for information. If you have any questions or would like more envelopes and/or a letter template, please contact Suzanne Battaglia at SBattaglia@myeloma.org or at (800) 452-CURE (2873).

    HELPING THE IMF

    If you use the special IMF links to shop at your favorite internet retailers (e-tailers) like Amazon.com for Mother's Day, they will donate a portion of your purchase to the IMF. You pay no more than you would normally for everything from clothing to computers to cruises. Whatever you buy, the programs, publications and research supported by the IMF will benefit. Here are a few suggestions to make your mom smile. Just click on the picture for more information.

    Visit our Shop for the IMF page at http://shop.myeloma.org to see the complete list of popular etailers who will donate a portion of your purchase to the IMF. Giving has never been more painless!

    Read for Research!
    Book clubs all over the US are asking their members to use the special IMF links to Amazon (amazon.myeloma.org) and Barnes and Noble (barnesandnoble.myeloma.org) to purchase their book selections each month. That way, members can get the benefit of the same everyday low prices on these web site AND every purchase results in a donation that supports the programs of the IMF. If your book club hasn't been buying books using the IMF affliate program links, what are you waiting for? Make your purchases count. Use the links!

  • Recipes for Research
    Marilyn Alexander, the Philadelphia support group, and the IMF community have come together to create one terrific cookbook and handy kitchen reference. From Autumn Apple Cake to Veal Stimbarada, there is something here for every taste. And if you aren't in the mood to cook tonight, there is an entire section with tips on everything from setting the table to stain remover. At only $15, it will make a great Mother's Day gift.

    Ribbon of Hope Ornament
    Whether you hang one on your holiday tree, your wall, or any other creative place you can think of, the IMF's 4-inch holiday ornament will bring a message of hope to anyone you give it to. We have a limited number available at only $10 each, so why not order one today?


    Imagine Moving Forward is the theme of the IMF's popular myeloma bracelet. At medical conferences and patient & family seminars we see people wearing them in honor, celebration, or in memory of a loved one. They're only $1 each in sets of 10, so order them for everyone you know who has been touched by myeloma. Order them on the web. If you have questions about the bracelets or would like more information, contact Suzanne Battaglia at (800) 452-2873, ext. 227, or SBattaglia@myeloma.org.

    See more exciting ways to help the IMF continue its important work in education, support and research.


  • ITEMS OF INTEREST

    Mensajero del Mieloma
    La IMF quiere enviar información sobre el mieloma en español a todos los pacientes, familiares e interesados. Para suscribirse al correo electrónico (enviaremos diez números al año), por favor, envíe su dirección a mensajero@myeloma.org. Queremos lanzar el número inicial la primera semana de junio. ¡Gracias!


    BANK ON A CURE®
    International Staging System
    NexProfiler
    A tool to help understand the current status of the disease and the questions you should be asking.
    HealthTalk's Multiple Myeloma Education Network

    The HealthWell Foundation is a non-profit, charitable organization that helps individuals afford prescription medications they are taking for specific illnesses. The Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs, including:

      • Prescription drug coinsurance, copayments, and deductibles
      • Health insurance premiums
      • Other selected out-of-pocket health care costs

    The HealthWell Foundation has recently opened the Multiple Myeloma fund to help even more patients gain access to the best health care available.  You can contact them at (800) 675-8416 or at www.healthwellfoundation.org.

    Patient Access Network Foundation (PANF) provides copay assistance for myeloma. Thalomid is the MRDD product covered for this condition. The PANF formerly just covered qualified myeloma patients' erythropoietin alpha expenses. Patients or healthcare providers may initiate the application process. Applications must be completed by both physician and patient, and income verification is required. Their phone number is 1-866-316-7263.
    Walgreens offers help in making Medicare prescription insurance plan choice.
    You fill out a form, take it to your nearest Walgreens, and they give you a free report that tells you all the major plans available in your area, including their web addresses and phone numbers; how many of your current prescriptions each plan covers; each plan's monthly premium and deductible; the co-pays for each class of prescription and more.