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Myeloma Minute
June 15, 2010
06.15.10
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

Webcasts from ASCO 2010
We have begun posting the first of 26 interviews with physicians presenting at the American Society of Clinical Oncology (ASCO) Annual Meeting, June 4-8 in Chicago, Illinois. The video interviewsare accompanied by the presentation abstracts and slides from the presentations when available. Keep checking as we post more.

ASCO Presentations Point to Longer Remissions, Fewer Transplants and Implications Beyond Myeloma
Continuous Therapy Becoming the New Paradigm of Treatment. "Progress in Myeloma Serves as a Roadmap for Transforming the Treatment of a Wide Range of Cancers"


Big News on the Advocacy Front!
Governor Rell signed the oncology parity bill in Connecticut! This is a big win for the IMF and the myeloma community, as now, insurance companies in the state of Connecticut will not have the power to dictate which treatments our patients have access to based on their financial circumstances! And the first-person testimony of IMFers Michael and Robin Tuohy played a part in the passage of this bill.

Individuals speaking with the authority of experience can influence policy. So, speak up for yourself. Speak up for others with myeloma. Get involved in our advocacy program and MAKE A DIFFERENCE!


Founders’ Circle* Summit
The International Myeloma Foundation recognizes our most generous donors with this special Founders’ Circle* Summit. Founders’ Circle members can join us for this special online “Webinar” to hear the latest updates about the IMF’s research initiatives.  Wednesday, June 30, 2010 12:00pm PDT/3:00pm EDT.  For more information or to register, contact Heather Cooper Ortner, Vice President of Development: hortner@myeloma.org.  (*Members of the IMF’s Founders’ Circle contribute a minimum of $10,000 a year.  Contact Heather for more details.)


Question for the Hotline? Use new Click to Talk!
Click to Talk is an exciting new service that puts you in touch with our Hotline more easily. Just click the icon that appears in the upper right hand corner on every page, enter your phone number, and you will receive a call from our office that will connect you to the Hotline. If you call after hours, you can set up a specific time and number for a callback.


Brian D. Novis Grant Applications for 2011 are on the web
The IMF offers grants to doctors and researchers working in the field of myeloma. All grant applications for funding in 2011 must be received by the IMF by August 31, 2010.

We Had a Wedding at the Portland Patient & Family Seminar!
Dr. Durie, Chairman of the IMF Board of Directors and registered minister, officiated at the marriage of Robin Laughlin and Paul Daurelle at the Portland Patient and Family Seminar, Friday, May 20.


MAKE YOUR SUMMER COUNT!
Are you planning a backyard BBQ, yard sale, cocktail party, wedding, anniversary or birthday party, running in a marathon or walking in a walk, or any other summer activity you might normally do?  If so, why not add a fundraising element to it, via a raffle, a suggested donation, or any other idea we might be able to chat about. Suzanne Battaglia is available to help you plan your activity from start to finish, and can provide you with hand-out information about myeloma and the IMF to help spread public awareness.  We also have our Mail For The Cure campaign, for those of you who don’t want to do an event but who want to do something. Please don’t hesitate to contact Suzanne at (800) 452-2873 or SBattaglia@myeloma.org with any questions or ideas.  Remember, no event or activity is too large or too small.

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.


African-Americans and women are less likely to undergo bone marrow transplantation
African-Americans and women are less likely than Caucasians and men to undergo bone marrow transplantation to treat cancers of the blood. (from Eureka Alert)


New uses for established cancer drugs significantly increase time patients survive
Revlimid doubled the number of myeloma patients whose disease remained in remission three years after treatment began, compared with those on placebo. (from The Wall Street Journal)

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

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

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!'"
  • 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.

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 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


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!


The IMF’s Living Well with Myeloma quarterly teleconference series continues on August 5th with Nutrition.
Speaker is Loch S. Chandler, N.D., M.S.O.M., L.Ac., from Providence Integrative Medicine Clinic, Portland, Oregon.

The Eighth Annual Cancer Survivorship Series: Living With, Through & Beyond Cancer
CancerCare, in collaboration with the National Cancer Institute, LIVESTRONG, Intercultural Cancer Council, Living Beyond Breast Cancer and National Coalition for Cancer Survivorship, presents a four-part telephone workshop series. This free series offers cancer survivors, their families, friends and health care professionals practical information to help them cope with concerns and issues that arise after treatment ends.

  • Part III, Survivorship and Workplace Transitions, will take place on June 22nd.
  • Part IV, Survivors Too: Communicating With and Among Family, Friends and Loved Ones, will take place on July 13th.

All of the workshops take place from 1:30 to 2:30 pm Eastern Time. These workshops are free – no phone charges apply.  However, pre-registration is required.  To register simply go to the CancerCare website,  www.cancercare.org/connect.


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.
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Many thanks to the supporters of The Myeloma Minute:
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Please call the hotline (800) 452-CURE (800-452-2873) or email TheIMF@myeloma.org if you have any questions.
Copyright 2010. International Myeloma Foundation. All Rights Reserved.

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