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WHAT'S NEWS

(front row) Mike Tuohy and Tyler Norton
(back row) Kyle Norton, Jamie Norton and Allison Tuohy
  • When Robin and Michael Tuohy came home from the doctor's office with the news that Michael is out of remission, their children and their children's friends decided to raise money for a cure! They sold "iced tea for research," and "candy for a cure." They also sold IMF bracelets, pins, tee shirts, stress balls and Michael's music CD! In two days they raised raised $130 for the IMF's programs. We salute these gentle and generous children.

Updates on stories we have been following with interest

  • Ontario Cancer Clinic Opens the Door to Private Care
    Donna Reece, a hematologist and oncologist at Princess Margaret Hospital, has made one referral to Provis for a patient who needs Velcade, and is looking into sending as many as 11 others. "It's just not acceptable to watch your patient die without benefit of this drug." (from the Globe and Mail)

    • How a "mistake" brought one Ontario man a reprieve
      A tenacious son with the know-how to work the system and a mysterious moment of bureaucratic weakness won him free access to a costly cancer drug no one else in Ontario can easily get. (from the Globe and Mail)

  • Cuts keep patients waiting for drugs in the UK
    Tens of thousands of patients face potentially fatal delays in receiving the best drugs for their diseases because of Government cuts. Velcade may not be funded until 2007. (from the News Telegraph)

WHAT'S NEW IN RESEARCH

  • ARTICLES

  • For more information, 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 EVENTS AND EXCITING OPPORTUNITIES

    Catholic Priest Raises Funds and Myeloma Awareness
    Father Phil, a myeloma survivor, is climbing Mt. Kilimanjaro in September. On August 26th, his parish is coming together to honor his retirement, and to raise money and myeloma awareness for the IMF!
    Fourth Annual Gary Heuer Jr. memorial Golf Tournament
    September 10, 2005
    Mumford, NY
    Donate for Drew Day - September 10, 2005 - Encinitas, CA
    Thousands of people are expected to attend the Donate for Drew Day event. An eclectic group of organizations including the San Diego Blood Bank and individual volunteers from the United States Navy, and others will be there to support Drew Spaeth and encourage the public to participate. Donate for Drew Day will feature live music by Uncle Boogie, a raffle ticket drawing for a wide range of gifts, and a silent auction. There will be plenty of family activities, and children are welcome.
    Click here to visit the home page of donatefordrew.com
    Click here to read the latest press release.
    Walk for the Cure
    September 24, 2005
    Rochester, Minnesota
    Walk for Myeloma
    October 15, 2005
    Miami, Florida
    1st Annual Golf Tournament & Benefit for IMF
    November 14, 2005
    Phoenix, Arizona

    Third Annual Robert A. Kyle Lifetime Achievement Award
    September 27, 2005
    Dr. Kenneth C. Anderson of the Dana Farber Cancer Institute is being honored for pioneering critical advances against multiple myeloma.
    Boston, MA

    The IMF has secured a room block at Hotel Commonwealth for the evenings of September 26 and 27, 2005. Hotel Commonwealth is within walking distance of The Harvard Club. If you would like to take advantage of the special rate, when booking please say you are part of the IMF room block. For reservations, call 866-784-4000 and rooms are on a first come first serve basis.

    The IMF is celebrating its 15th Anniversary Gala Hollywood style with Lights, Camera, Action, Cure! on November 12th at the Beverly Hilton Hotel, home of the Golden Globes. If you are interested in being involved with this year's planning committee, we would love to hear from you. Contact Candace McDonald, Associate Director of Development at cmcdonald@myeloma.org or call at 800-452-2873 x 222.
    Just a few more squares are left for the final Multiple Myeloma Quilt of Courage. If you can sew, embroider, paint or even iron on a phototransfer, you should be part of this quilt. Everywhere we take them, people are moved by the individual messages on the quilt squares. Let your voice be heard. Contact IMFer Harriet Bertsche via email at bertsche@optonline.net or (914) 478-4689 – remember, they are almost gone! Don't be left out.

    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 will give you the "A to Z" of fundraising ideas, and other helpful suggestions.

    See complete list of 2005 UPCOMING EVENTS.


    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. To do this, you access their site via special URLs we have set up. For Amazon, it's http://amazon.myeloma.org instead of amazon.com. It will take you to the same place, but any purchase you make during that visit will be credited to the IMF.
    Here are a few hot titles you may be interested in:

    Our own Rosanne Kalick, who co-leads the Westchester, NY support group, has written a book titled "Cancer Etiquette: What to do, what to say, when someone you love has cancer." You can order now at a discount.

    "The more I investigated, the more convinced I became that most people do not know what to say or what to do when someone they know or love has cancer. This book will help them find words that will not offend or hurt, but will help to comfort. This book will enable them to perform simple acts of loving-kindness that are blessings to the patient."

    "When you meet someone for the first time, or walk into a house you are thinking of buying, or read the first few sentences of a book, your mind takes about two seconds to jump to a series of conclusions...I think those instant conclusions that we reach are really powerful and really important..." from Malcom Gladwell's "Blink".
    On her latest tour, Carole King is back and better than ever. Try her new album The Living Room Tour (LIVE).

    Visit our Shop for the IMF page at http://shop.myeloma.org for express links to other popular etailers who will donate a portion of your purchase to the IMF.

    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. (For a more personalized tribute in jewelry, check out IMFer Kristi Difford's beautiful handmade jewelry below.)

      Multiple Myeloma Awareness Jewelry
      The response has been great for the new garnet bracelet IMFer Kristi Difford has added to her line of beautiful custom bracelets to honor those who have joined the struggle against multiple myeloma. Check it out.

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


      WEBCASTS
      • More Options, More Hope
        IMF Scientific Advisor Dr. Paul Richardson of the Dana-Farber Cancer Institute on early use of Velcade. (Newstream.com)

      ITEMS OF INTEREST

      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.

      Help Us Help Others...
      As a non-profit organization, the IMF is completely dependent on the support of our members. Tax-deductible donations in honor of a friend or family member make great gifts and are a wonderful way to celebrate a special occasion. You can donate online or by calling the IMF at (800) 452-CURE. We sincerely thank you for your support.