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WHAT'S NEWS
  • The IMF Launches Website for Global Spanish-Speaking Community
    The new "Website en español" will provide the same comprehensive level of contacts, support, and medical and pharmaceutical information that has been available in English and Portuguese.

  • Drug Makers Get OK for Aid to Seniors
    In a legal opinion that could help many thousands of Medicare beneficiaries, drug manufacturers were told that they can continue giving free medicine to poor people even if they're enrolled for the new drug benefit. (from the Washington Post)

  • FDA requires drugmakers to provide critical information in computer-friendly format
    Beginning June 30, the FDA intends to require drugmakers to provide information on the indications and serious side effects of their products in a standardized electronic format that can be quickly and easily sent to physicians' computers and hand-held devices. The change is intended to reduce the estimated 300,000 medical errors a year. (from the Baltimore Sun)

  • Urine test predicts drug response
    A simple urine test could show which drugs are best suited to a person's body, say researchers who have shown that the technique works in animals. (from news@nature.com)

  • Stem Cells Stuck in Patent Quagmire
    The state of California has been working its way through a list of thorny issues surrounding its groundbreaking Proposition 71 -- $3 billion in funding for embryonic stem cell research that voters approved in 2004. Now, as the state prepares to distribute its first round of Prop 71 funding, it is facing a troubling prospect: a set of broad patents covering embryonic stem cells could substantially inhibit industry from investing and partnering in the research. The patents could also make it more difficult for the state to recoup its investment in stem cells if the research eventually leads to profitable technologies. (from MIT Technology Review)

  • Cell-Growth 'Switch' Holds Clues to Cancer
    A genetic switch involved in animal growth and development also helps normal cells from becoming cancerous, a U.S. study finds. (from HealthDay)

  • Robert A. Kyle Lifetime Achievement Award Update
    • The IMF's Fourth Annual Kyle Lifetime Achievement Award Dinner is May 16th, only a few weeks away. It promises to be an incredible evening, but none of it would be possible without our generous sponsors: Darlene & Walter Reinhold, Celgene Corporation, Millennium Pharmaceuticals, Infinity Pharmaceuticals, Kosan Biosciences, Peter S. Bing, Amgen, Benson & Carol Klein, World City Foundation, and The Binding Site. Learn more about our sponsors and purchase your tickets to the awards dinner on May 16th.


ADVOCACY UPDATE
  • House Budget Inaction Stalls Senate's Cancer Funding Momentum
    IMF staffer Greg Brozeit reports that this year's federal budget and appropriations process is likely to be very contentious this year with strong disagreements between the Senate, the House, among moderate and conservative congressional Republicans, and members of the Budget and Appropriations committees. The question remains: Will medical and cancer research funding be cut for a second consecutive year?

  • The NIH Budget and the Future of Biomedical Research
    Federal funding for biomedical research in the United States has fueled discoveries that have advanced our understanding of human disease, led to novel and effective diagnostic tools and therapies, and made our research enterprise an international paragon. Ensuring durable federal support for such research has not been without tribulations. As with all line items in the federal budget, NIH funding is subject to the vicissitudes of the political process, and intermittent periods of growth have been followed by periods of decline. (from the New England Journal of Medicine)

  • Medicare drug plan extension sought
    Sen. Barbara Mikulski, D-Md., and 47 other senators have signed an open letter to Senate leaders asking for legislation that would allow seniors to sign up for the program without penalty through the end of the year. "Seniors need more time to understand" benefit and enroll, the Senators say. (from The Daily Times)


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

Vienna Patient & Family Seminar
May 5-6, 2006

Vienna, Austria
Seminário para Pacientes & Familiares IMF LA
May 6, 2006
Santos/SP, Brasil
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:

4th Annual Robert A. Kyle Lifetime Achievement Award to go to Brian Durie, MD
May 16, 2006
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, the first system ever developed to classify myeloma in a standard, universal fashion, and the vital building block for the International Staging System, also co-developed by Dr. Durie with the International Working Group. In total, Dr. Durie 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 Stratford Runner
In Canada, Sheldon is going to run 1000 kilometers 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).

SHOP FOR THE IMF

Shop at leading internet retailers (e-tailers) like Amazon.com, and 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.

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!

  • NEW!! 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.

    NEW!! 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

    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.