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Myeloma Minute - June 21, 2006
06.28.06

WHAT'S NEWS

IMF Receives Grant from Goldman Philanthropic Foundation for Bank On A Cure
Partnership for Cures [PFC], a charity that assists individuals, foundations, and corporations with strategic philanthropy in the field of medical research, has fostered a collaboration in which PFC donor Goldman Philanthropic Partnerships [GPP] has committed a $25,000 grant to IMF for its Bank On A Cure research project

Hot from the Hotline
Myeloma patients who are being treated for high blood pressure (hypertension) should be aware that ACE (angiotensin-converting enzyme) inhibitors should be used with great caution or avoided altogether. There is medical documentation that ACE inhibitors can cause kidney damage or even kidney failure in patients with underlying light chain deposition of the kidneys. Since the tendency to develop light chain deposition is often not established or well documented, ACE inhibitors must be used with due caution or avoided. There are many other options, including therapy with diuretics, that can be used safely to control hypertension in myeloma patients. Please consult with your primary care physician and oncologist before you select a therapy for hypertension or if you are currently receiving treatment with an ACE inhibitor. Some commonly used ACE inhibitors include:

  • Capoten (captopril)
  • Vasotec (enalapril)
  • Prinivil, Zestril (lisinopril)
  • Lotensin (benazepril)
  • Monopril (fosinopril)
  • Altace (ramipril)
  • Accupril (quinapril)
  • Aceon (perindopril)
  • Mavik (trandolapril)
  • Univasc (moexipril)
Report from the 2006 Robert A. Kyle Lifetime Achievement Award
Dinner chairs Carol and Benson Klein take us to the award dinner May 16, 2006, at the National Press Club in Washington, DC, where Dr. Kyle presented the award to Dr. Brian Durie.
Biogen exec: Industry must focus on safety
The drug industry must focus more on safety than it does on effectiveness when developing new drugs, Biogen Idec's executive vice president for development, Burt Adelman, told fellow researchers at a meeting in Boston Monday.
If you live in the one of the thirteen original colonies, or anywhere nearby, why not attend the Philadelphia Patient & Family Seminar on August 4-5, 2006. It's a great opportunity to gain access to the latest information on myeloma treatment and research with others who share your experiences and interests. If you want to know what attending a seminar is like, why not listen to what others have to say about it.
A Lion in the House
A Lion in the House premieres June 21 and 22 as a special presentation of the Independent Lens series on PBS. It follows the stories of five children and their families as they battle pediatric cancer. As the film compresses six years into one narrative, it puts viewers in the shoes of parents, physicians, nurses, siblings, grandparents and social workers. Yes, we know, the topic is not myeloma; but the experiences triggered by a diagnosis of cancer are universal. Worth taking a look.
The 16th Annual IMF Ribbon of Hope Gala is coming to Beverly Hills, CA on October 21, 2006
As you know, the IMF is the lifeline for myeloma education, research, support, and advocacy to over 135,000 patients, family members, caregivers, medical professionals and researchers throughout the world. Our goal is to fund the best research, provide the highest quality education, offer the most thoughtful, comprehensive support, and serve as fervent advocates.
In order to fully achieve this, the IMF relies on the most passionate members of the myeloma community. . . people like you. We invite you to participate in the IMF's 16th Anniversary Gala by becoming a Dinner Committee Member! If you are interested, please contact Candace McDonald at cmcdonald@myeloma.org for more details.
The American Cancer Society held their annual Relay For Life overnight event on June 16 and 17, in Warwick, RI. For the first year, members of the Rhode Island MM Support Group (RIMMSG) presented a myeloma information booth at the event. IMF educational materials and RIMMSG contact information were handed out to the multitudes of people in attendance. This event not only served patients with all forms of cancer, but offered the opportunity for the RIMMSG to become better acquainted with health care professionals, staff members and volunteers within the community. Events such as this bring public awareness about multiple myeloma, the IMF and local support group services to the community.


WHAT'S NEW IN RESEARCH

  • ARTICLES
    (IMF Scientific Advisors are marked with an *)

UPCOMING SEMINARS AND CLINICAL CONFERENCES

Seminário para Pacientes & Familiares IMF LA
June 24, 2006
Rio de Janeiro, Brasil
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, July 6, 2006, in Portland, Oregon and Thursday, August 3, 2006 in Philadelphia, Pennsylvania.
Portland Patient & Family Seminar
July 7-8, 2006

Portland, Oregon
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
2nd Annual Walk for Myeloma
October 14, 2006

Miami, Florida
  • 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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