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WHAT'S NEWS
  • Out of Illness Comes Acclaim for Father & Son
    Standing behind the camera, Jeff Moonie Jr. didn't realize he was shooting a documentary -- let alone one that would win the best documentary award at the 2005 Asheville Film Festival. "I was working on another project, so I had a camera around and thought I'd archive my dad's illness." (His father had myeloma and had received a stem cell transplant from a sister.) But watching his father through the viewfinder, Moonie Jr. began to imagine Donor as sailing into deeper thematic waters. (from Backstage.com)
    Read an interview with Jeff Moonie Jr. in ArtSavant.

  • Cancer-drug makers weigh price limits
    As high prices of cancer drugs spark the kind of patient outrage that high AIDS-drug prices unleashed more than a decade ago, a few pharmaceutical and biotech companies are weighing caps and other cost-containment measures, before the outcry turns into a public-relations crisis for the industry. The IMF's Susie Novis is interviewed in this article. (from the Wall Street Journal by way of the Pittsburgh Post-Gazette)

  • Velcade Receives Canadian Approval For Second-line Use In Multiple Myeloma
    "This approval allows patients to use VELCADE at an earlier stage, providing them with a chance at living longer," said Dr. Donna Reece, Associate Professor, Department of Medicine at University of Toronto and APEX trial investigator. (from the Pittsburgh Post-Gazette)

  • Advocacy Update: House Leadership Uses Obscure Procedural Move to Cap Spending Levels
    After failing to secure a majority to pass the fiscal year 2007 Budget Resolution, the House leadership is now moving toward invoking a little used provision to set lower domestic spending levels consistent with the President's budget. House moderates opposing the current bill as drafted have promised to keep working toward a budget that increases medical and education spending by $7.2 billion.
  • The International Myeloma Foundation Presents Kyle Lifetime Achievement Award to Dr. Brian Durie
    Hematologist, Researcher, Patient Advocate and Educator. Co-Created the First Staging System to Standardize Classification of Myeloma Patients. (from MarketWire)

  • Big Golf Weekend for IMF!!!
    See the three exclamation points? Normally that would be considered a little over the top. However, we put them in because this weekend--this Saturday!--no fewer than three golf tournaments are being held to support the programs of the IMF. On the East Coast, the
    Ralph Ferrizzi Golf Tournament, on the West Coast the Leona Cravotta Golf Tournament, and smack dab in the middle, the 7th Annual JC Golf Tournament. Where is ESPN when you need them?

  • Support Group Leaders' Retreat Starts May 19th in Scottsdale, Arizona
    In just a few more days, group leaders from all over the world will be congregating in Arizona to share sun, stories, and support. Stay tuned for our report from Scottsdale.


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, 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!

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 sites 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

    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."

    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.