We are international

Myeloma Minute - August 14, 2006


Run the NYC Marathon on November 5th and Fight Myeloma
Okay, okay, so maybe you aren't going to run the marathon. Maybe even before your diagnosis your idea of a strenuous workout was looking under the couch for the remote. But you must know someone who would love to run the NYC Marathon. It is a very prestigious race, and slots are hard to come by. That is why it is so amazing that 25 slots have been reserved for us by Team Continuum, a non-profit founded by myeloma survivor Paul Nicholls to help all cancer patients. This is a great opportunity, and it becomes even more so when you learn that Team Continuum will match every dollar raised for the IMF up to $2500.

New and Updated IMF Publications!
The Spanish language Conceptos Breves Sobre La Enfermedad Y Las Opciones Terapéuticas Mieloma Múltiple Cáncer De La Médul has been updated, as has Understanding Velcade in both English and French.

And joining Mieux Connaître VELCADE® (bortézomib) pour Injection are two new French publications, Comprendre Revlimid® and Comprendre La Dexaméthasone et Autres Stéroïdes. Hourra! Nous avons eu besoin d'eux!

Congress to Probe Policies at NIH
A bipartisan group asks the health agency for details of a researcher's ties to drug companies to assess its conflict-of-interest guidelines. (from the LA Times)

Sticky DNA helps spot leukaemia
A University of Florida team has developed a set of DNA probes which only stick to cancer cells, making it easier to identify them. The researchers are now trying to develop probes which will only stick to specific types of cancer cells. (from the BBC)

Calling All Kids!
If you're a kid who's ready to fight back against myeloma, we'll help you develop and organize your ideas and give you the materials and encouragement you need to put on the best fundraiser ever!

Rare cancer weakens bones
Living with: Multiple myeloma

Tom Jewett has long told people, "You never know yourself until you are faced with a crisis situation." What he learned during his ordeal is that life -- specifically, the people in his life -- matters most. (from the Delaware News Journal)

The Twin Solution
Where sharing DNA, specifically stem cells, serves to ward off a twin's bone marrow cancer. (from the San Francisco Chronicle)

Win a Trip for Two to Barcelona, Spain!
You could support the IMF's Myeloma Research and win a trip to Spain.
Fly American Airlines and stay at the Hotel Arts Ritz-Carlton in Barcelona for 7 days and 6 nights, including daily breakfast for two. Read on....


  • Andy Lebkuecher, IMF Support Group Director, Southeast Region, will attend the first meeting of the newly formed Space Coast Multiple Myeloma Support Group on Thursday of August 10, 2006. The meeting is from 5:30 pm to 6:30 pm, in Conference Room 6 at Parrish Medical Center, 951 North Washington Ave., Titusville, FL. For more information contact Rosemary Herring, 321-271-4906 or Email: spacecoastmm@cfl.rr.com.

  • He will also be the speaker at the meeting of the recently formed Fayettville, NC Support Group on August 15, 2006 at The Blood & Cancer Clinic. PO Box 53095, Fayetteville, NC. For information, please contact Stephanie Chavis, MFT at 910-483-8586 ext: 127.


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.


Czech Patient & Family Seminar
September 2, 2006

Prague, The Czech Republic
4ème Séminaire d'Information et de Soutien Pour les Patients et Leur Famille
September 8, 2006
Paris, France
Seminario para Pacientes & Familiares
November 4, 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

2nd Southwest Symposium on Multiple Myeloma
November 4, 2006
Tempe, Arizona


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.

2nd Annual Walk for Myeloma
October 15, 2006

Miami, Florida
Money for Miracles
The first annual fundraiser from the Rhode Island MM Support Group
October 27, 2006
Cranston, Rhode Island
The 16th Annual IMF Ribbon of Hope Gala is honoring the Bank On A Cure® team.
Save The Date! The International Myeloma Foundation 16th Annual Gala is the place to be on the evening of Saturday, October 21st. . . and we couldn’t be more thrilled about our Guests of Honor: the world-class team of passionate scientists who lead the way for Bank On A Cure®.


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!

What if the IMF earned a penny every time you searched the Internet? Well, now we can!
GoodSearch.com is a new search engine that donates half its revenue, about a penny per search, to the charities its users designate. You use it just as you would any search engine, and it’s powered by Yahoo!, so you get great results. Just go to www.goodsearch.com and be sure to enter the IMF as the charity you want to support. Just 500 of us searching four times a day will raise about $7300 in a year without anyone spending a dime! And, be sure to spread the word!

Turn Your Vacations Into Donations
Book your personal and business travel on our new travel website, myelomatravel.com! Every time you do, the IMF will receive a portion of the travel commissions. You get the same low rates offered by other travel websites while helping to raise funds for the IMF's education and research programs. It's that simple!
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.


They'll Be Back!
The Group Room, the weekly syndicated cancer talk show that is also simulcast on the web and XM Satellite, received so many calls and e-mails during their July 30th call-in show on myeloma that they have invited Dr. Durie and Susie Novis to return on August 27th to address the issues raised.

Help for Underinsured Myeloma Patients
Help is now available through the Chronic Disease Fund to 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.

'International uniform response criteria for multiple myeloma' published in the journal Leukemia
The article is the result of the work of the International Myeloma Working Group.

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 Opens
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 agosto. ¡Gracias!


International Staging System

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

HealthTalk's Multiple Myeloma Education Network

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.

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.

 related articles