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Myeloma Minute
March 24, 2011
03.24.11
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.

WHAT'S NEWS

The IMF is going to the IMW!
For those of you who get itchy when presented with more acronyms than usual (we know how many there are in myeloma, and try to help whenever we can), the IMW is the International Myeloma Workshop, a biannual meeting of myeloma experts from all over the world. Presentations given there highlight emerging advances in the understanding of the biology and treatment of myeloma. This year the participants are meeting in Paris at the Louvre! The meeting will run from May 03- 06, 2011. The IMF will be there to bring you daily video session summaries. After the meeting, webcasts of every presentation will be available on our website. So, stay tuned!


NCCN Tweaks 2011 Multiple Myeloma Guidelines
The latest version of the National Comprehensive Cancer Network (NCCN) multiple myeloma guidelines include a few small changes to reflect recent advances in diagnosis and treatment that were presented at the NCCN 16th Annual Conference. The tweaks include moving the serum free light chain assay from "useful under some circumstances" to a recommended part of the initial diagnostic workup, as well as adding fluorescence in situ hybridization (FISH) for 1q21 amplification. [The link above is to a PDF of the Patient Guidelines. To see the Physician Guidelines, you must register and login here. The registration and login is free] (from Medscape and the NCCN)


Don't miss the Myeloma Awareness Month Teleconferences!
In the third teleconference of Myeloma Awareness Month 2011, Stephanie Turnbull of Diplomat Specialty Pharmacy, discussed the ins and outs of Medicare. If you have missed any of the teleconferences, you can access them on the IMF website.

Researchers sequence multiple myeloma genome in landmark Nature study
Using new genome sequencing technologies, researchers from the John Theurer Cancer Center at Hackensack University Medical Center joined colleagues from 20 major North American research institutions to publish the first complete genomic portrait of multiple myeloma, a highly aggressive blood cancer. Findings from the study point to new directions for potential myeloma therapies, and begin to unlock the mysteries of what causes this devastating malignancy. (from e! Science News)

Kyphon® Balloon Kyphoplasty Found Beneficial for Treating Spinal Fractures in Cancer Patients
A recent study found that Kyphon Balloon Kyphoplasty provided cancer patients better back-specific function, more rapid back pain relief and improved quality of life compared with non-surgical care one month after treatment. (from the Vancouver Sun)
Read Medtronic's press release.

Onyx Gets Fast-Track Status From FDA For Carfilzomib
The U.S. Food and Drug Administration (FDA) has granted fast track designation for carfilzomib, a next generation proteasome inhibitor for the potential treatment of patients with relapsed and refractory multiple myeloma. The Fast Track designation process was developed by the FDA to facilitate the development, and expedite the review of drugs to treat serious or life-threatening diseases and address unmet medical needs. (from the Wall Street Journal)
Read Onyx's press release.

1000 CRANES OF HOPE
Millennium: The Takeda Oncology Company has chosen to artistically represent their commitment to patients through the creation and construction of a monument at their headquarters in Cambridge, MA. This exhibit contains one thousand origami-folded cranes—each crafted from the handwritten personal wishes of cancer patients, employees, physicians, caregivers and advocates. Now you have the opportunity to create a Crane of Hope online, and for every Crane created during the months of March, April and May, Millennium will make a donation to the IMF.

Progression From Precursor Disease to Multiple Myeloma
Thomas E. Finucane, MD, of the Department of Medicine at Johns Hopkins Bayview Medical Center in Baltimore, writes to the editor of the Journal of the American Medical Associaton about a recent review of multiple myeloma precursor disease. Read the reply (from the Journal of American Medical Association)


Thalidomide's Comeback. Who'd have thought the drug would have a second life?
The most reviled drug of the 20th century is, incredibly, on its way to a second act. Thalidomide, used in the late 1950s and early 1960s as a sedative and anti-nausea medication, became the ultimate symbol of pharmacopoeia gone awry. Recently, thalidomide has slouched back toward respectability as an FDA approved treatment for patients with newly diagnosed multiple myeloma. (from Slate)


IMF Research Grant Awards Presented at ASH
The Brian D. Novis and Aki Horinouchi Research Grants were presented during the American Society of Hematology (ASH) meeting in Orlando, Florida. Two senior grants, three junior grants, and, for the first time, two Aki Horinouchi grants were awarded to the researchers.


Development of resveratrol drug, SRT501, terminated
GlaxoSmithKline is dumping its program for SRT501, a special formulation of resveratrol which the pharma company scooped up in the $720 million buyout of Sirtris in 2008. (from Fierce Biotech)


FDA grants orphan drug status for Senesco's SNS01-T in treatment of multiple myeloma
Senesco Technologies, Inc. announced today that the U.S. Food and Drug Administration has granted orphan drug designation for the company's lead drug candidate SNS01-T for treatment of multiple myeloma. (from The Medical News)

Thinking about starting a support group? The IMF Support Group Team is here to help!
Through a network of over 100 myeloma support groups, the IMF seeks to ensure that patients and families have local access to support and information. Among their many benefits, support groups can increase knowledge, decrease anxiety and create a sense of community. The IMF can offer you tips to get started and logistics to consider when starting up a myeloma specific support group.


Charitable IRA Rollover Extended for 2010 and 2011
Just a reminder that among the multitude of items included in the Tax Relief Act, signed into law by President Obama on December 17th, was an extension of the Charitable IRA Rollover provision through the end of 2011.

We invite you to visit and participate in the International Myeloma Foundation's newly-launched blogs.
We have expanded our website to include blogs by patients, caregivers, nurses, doctors and others to provide a forum for discussion with the community on matters of importance to everyone battling myeloma. You can also now comment on any article on our site by using the comment tab. Come visit our corner of the blogosphere!

ADVOCACY UPDATES
  • The Advocate of the Month is E. Michael D. (“Mike”) Scott
    We would like to congratulate and THANK E. Michael D. (“Mike”) Scott, an IMF board member, for being March’s Advocate of the Month and a driving force in building a strong advocacy presence for the IMF.

  • With a call to action and a little encouragement, IMF Advocacy team member, Meghan Buzby, gives patient David Cowan a new lease on life
    It was an a typical Friday evening after a very busy work week when Meghan Buzby, Grassroots Liaison for the IMF Advocacy team, received notice that a hearing we had been waiting for on a bill in New Mexico, was going to happen in less than 12 hours. The hearing was to take place in Santa Fe on Senate bill 385, which focused on ending the disparity in insurance coverage for oral cancer drugs. This is an issue, as many of you know, that the IMF Advocacy team has been working on in various states and at the federal level for quite some time. We've had many ups and downs along the way—that's just how it goes in politics—but no success story, big or small, has touched me as profoundly as this one.

  • Are You a Member of the Myeloma Action Network?
    Want to stay informed about IMF’s advocacy activities? All you need to do is to join the Myeloma Action Network at www.advocacy.myeloma.org and you will automatically receive e-mail advocacy alerts from the IMF. To learn more about health care reform and other important advocacy issues that have an impact the myeloma community, please visit the IMF advocacy page at myeloma.org.

    For more information about the legislation listed above or any other IMF advocacy initiative, contact IMF’s Director of Government Relations, Christine Murphy at cmurphy@myeloma.org or 703-738-1498.

WHAT'S NEW IN RESEARCH
Members of Scientific Advisory Board*, Members of International Myeloma Working Group†

INTERNATIONAL MYELOMA WORKING GROUP

New papers have been published by members of International Myeloma Working Group using Bank on a Cure® custom SNP chip technology.


CLINICAL TRIALS

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 (NCI). To see the summaries of newsworthy clinical trial results, visit the National Cancer Institute Multiple Myeloma Trial Results


UPCOMING SEMINARS AND CLINICAL CONFERENCES
Note: Some of the international seminar cities have been set, but the venues and agendas are still in the works. Check back often if you are interested in attending, as we post the sites and speakers as they are confirmed


UPCOMING MEMBER EVENTS
  • Third Annual MILES FOR MYELOMA 5K Walk/Run
    REGISTER TODAY for the 2011 Miles for Myeloma 5k Walk/Run – Saturday, April 23, 2011! This family-friendly event will once again be held along the beautiful and scenic Martin Luther King Drive in Philadelphia, Pennsylvania. Join over 600 participants for what is sure to be a fun-filled day honoring multiple myeloma patients, caregivers and family members

  • 1st Annual RHS Open
    Rich Saletan had a mission to put the IMF out of business by finding a cure for myeloma. Help Rich's family and friends as they pursue the cure at the 1st Annual RHS Open.

  • 4th Annual Carolyn Czerkies Memorial Golf Outing
    Over the past three years, with the generous donations from all the participants, sponsors, and volunteers, our event has raised over $45,000. In fact, last year's event (130 golfers), was one of the nation's biggest charity golf outings to benefit the IMF. For more information and to make a donation, click here to visit the event site.

  • The 2B Awards
    Are YOU, or someone you know the next Rising Star?? The 2B Awards, an online talent competition, was launched November 11, 2010 and is creating a buzz all over the Internet.

  • Peter Pritchett Friends and Family
    Welcome friends, patients, colleagues and friends of Peter and Susan Pritchett. Many people have asked how Pete is doing and what they can do to help. We have set up this Web site in conjunction with the IMF to reach our goal of raising $50,000 to start a research grant in Pete's name

  • In Honor of Abby Brown
    TOGETHER, we can conquer this disease! Please support our cause!
ONGOING MEMBER EVENTS
  • Kindness for a Cure: The Denise Gaeta Bencel Fund
    Let's make the world a bit nicer and help find a cure - a win-win! Spend one month - 30 days - spreading kindness to others. Pay yourself one dollar per day - less than the cost of a cup of coffee. At the end of the thirty days donate the money to the International Myeloma Foundation. Tell us about your personal experiences during this month. Click here to visit the event website for more information and to make your donation.
  • Veterans Against Myeloma
    IMFer Jerry Walton encourages all vets to join Veterans Against Myeloma. "Many MM patients are veterans. Our combined efforts to continue our service through the Veterans Against Myeloma cause can help research and help us win the battle by finding a cure. Hopefully one day together we can say 'Mission Accomplished!'"
  • Myeloma Buddies
    These adorable hand-knit dolls are so cute, you will want one for everyone on your list.
  • VISIONS Notecards by Jeff; A Cure for Karl
    Jeff Hanson is a 15 year-old, visually impaired artist from Overland Park, Kansas. IMFer Karl Vollstedt and Jeff are great friends who use their time and talents to benefit others. Jeff created these note cards as a gift to Karl and to myeloma research.

HELP THE IMF
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.
Host an Afternoon Tea

How to Host an Afternoon Tea
An elegant and easy way to build awareness about myeloma and raise money in your community, and the IMF will help.

Kids Fight Back!
Kids, need to earn a Citizenship merit badge or fulfill community service requirements? Here's a great idea about how to do both while you fight back against myeloma. We'll help you put on the best fundraiser ever!
Shop for the IMF Shop for the IMF
Shop with the leading merchants on the Internet, receive the same price as anyone else visiting their sites, and support the IMF at the same time!
See more exciting ways to help the IMF continue its important work in education, support and research.

ITEMS OF INTEREST

Myeloma Manager
Have you downloaded your Myeloma Manager Personal Care Assistant

Another exciting first from the IMF!
Free software to help manage and understand your lab results, and more!


Help for Underinsured Myeloma Patients
Thanks to the advocacy of the IMF, the Chronic Disease Fund has received an infusion of money to help them meet the needs of underinsured patients with multiple myeloma. The fund is designed to help patients with their insurance co-payments and/or their Medicare Part D 'doughnut holes.' Patients must qualify based on financial need. To speak with a representative of the Chronic Disease Fund, please call 877-968-7233, or contact them through their web site at cdfund.org.

NexProfiler
A tool to help understand the current status of the disease and the questions you should be asking.

Please call the hotline (800) 452-CURE (800-452-2873) or email TheIMF@myeloma.org if you have any questions.
Copyright 2011. International Myeloma Foundation. All Rights Reserved.

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