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Myeloma Minute - July 7, 2006
07.07.06

WHAT'S NEWS

Blogging from Portland
Have you ever been to an IMF Patient & Family Seminar? If you have, then you know what all the excitement is about. If you haven't, why not get a little taste by following the blog from Portland? You can even post comments and questions for the bloggers to answer. And it all begins on July 7.

Cost a barrier to care for many cancer survivors
One in five cancer survivors younger than 65 delay getting necessary care, or may not receive such care at all, due to cost, a new study shows. (from Reuters).

Novel Connection Found Between Biological Clock And Cancer
Dartmouth Medical School geneticists have discovered that DNA damage resets the cellular circadian clock, suggesting links among circadian timing, the cycle of cell division, and the propensity for cancer. (from Science Daily)

Setbacks for medical research
For the first time in three decades, federal funding for the National Institutes of Health was cut this year. The reduction, which followed two years of level funding, not only imperils the development of lifesaving scientific breakthroughs but also has a detrimental impact on regional economies that are dependent on innovation -- and New England is at the forefront. (from the Boston Globe)

The 16th Annual IMF Ribbon of Hope Gala is honoring the Bank On A Cure team.
We are acknowledging the groundbreaking work done by the excellent team behind the Bank. We invite you to participate in the IMF's 16th Anniversary Gala by becoming a sponsor or by taking out an ad in the Tribute Journal! If you are interested, please contact Candace McDonald at cmcdonald@myeloma.org for more details.

Minding Medicare's Drug Gap
When Congress created the Medicare prescription drug program, it adopted an unusual idea to hold down costs: the so-called doughnut hole. The program pays most of a participant's drug bills until expenses reach $2,250 in a year. Then it stops paying until costs exceed $5,100. That leaves a hole of $2,850 that seniors with serious prescription needs are expected to manage on their own. Now, six months into the drug program--the first new major healthcare benefit for the elderly in decades--3.4 million seniors are approaching the doughnut hole. (from the Los Angeles Times)

Personalized medicine: Tailoring treatment to your genetic profile
In medicine, one size doesn't fit all. Two people who take the same cancer medication, for instance, may have very different responses. One may have severe, even life-threatening side effects, while the other experiences few if any side effects and seems to sail through treatment. (from the Mayo Clinic Newsletter)


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

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, August 3, 2006 in Philadelphia, Pennsylvania.
Seminário para Pacientes & Familiares IMF LA
July 31, 2006
São Paulo/SP, Brasil
Philadelphia Patient & Family Seminar
August 4-5, 2006

Philadelphia, Pennsylvania
Czech Patient & Family Seminar
September 2, 2006

The Czech Republic
4ème Séminaire d'Information et de Soutien Pour les Patients et Leur Famille
September 8, 2006
Paris, France
Seminário para Pacientes & Familiares
September 23, 2006
Pamplona, Spain
Seminario per i pazienti e le famiglie
September 29, 2006
Bologna, Italy
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.

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
Theresa's Run for Myeloma
August 13, 2006
Chicago, Illinois
Run for TEAM IMF in the LaSalle Bank Chicago Distance Classic - August 13, 2006
The IMF is registered with the LaSalle Bank Chicago Distance Classic.If you live in the Chicago area, or will be in that area on August 13th, you can support the IMF by running either a half marathon or a 5K.
We hope all you runners in Chicagoland will take advantage of this great summer activity. Besides all the fun you'll have, you will be helping to raise awareness and much needed dollars for myeloma cancer research.
2nd Annual Walk for Myeloma
October 14, 2006

Miami, Florida
Money for Miracles
The first annual fundraiser from the Rhode Island MM Support Group
October 27, 2006
Cranston, Rhode Island
  • 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!

Monet Money
IMFer Jack Verespy is a multiple myeloma survivor and is in the fine art and fine art reproduction business. If you are a collector, their company, Oscar LLC, is selling very limited edition giclée on canvas prints of possibly unknown Monet works. They are in the process of authenticating the original paintings, and when the prints are sold, they will donate a portion of the proceeds from the sale of these prints to the IMF. In addition, they will be offering a 20% discount to anyone identifying themselves as an IMFer. For more information, please visit www.oscarllc.com

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 affiliate 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

    The IMF Joins the Combined Federal Campaign
    The IMF is thrilled to announce that it has been selected to join the Combined Federal Campaign (CFC). Each year, the CFC's workplace campaigns help raise millions of dollars. Pledges made by Federal civilian, postal and military donors during the campaign season (September 1st to December 15th) support eligible non-profit organizations that provide health and human service benefits throughout the world--now including the IMF! So, if you are a Federal employee, please participate in the CFC campaign, September 1st through December 15th, and designate the IMF as your beneficiary by using our organization code 1178.


    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.

    Anyone who has had radiation, chemotherapy, or any medical procedure knows the humiliation of a hospital gown. The Original Healing Threads™ are garments that are sophisticated, attractive, comforting, and most importantly, dignified.

    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.


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