October 8, 2002 IMF Myeloma Minute
What's News:
- Susie Novis receives the Joseph Michaeli Award for Contribution to Myeloma at the Lymphoma and Myeloma 2002 conference in New York City.
The award was presented by Dr. Ruben Niesvizky of Weill Medical College of Cornell University. Co-recipient was MMRF president Kathy Giusti. Read the text of Susie's acceptance speech.
- Gala Update: At one of our most successful Galas ever, even the most frantic bidding could not keep John Zaccaro from winning the Chocolate Lab puppy. His wife, former Vice Presidential candidate Geraldine Ferraro, spent the rest of the evening with a very tired puppy happily snuggled in her lap! The full story with pictures will be in the next issue of Myeloma Today.
- The IMF congratulates the IMF UK on their 5th anniversary.
What's New in Myeloma Research:
Advocacy Update:
OVAC Grassroots Training
The 2nd Annual One Voice Against Cancer (OVAC) Grassroots Training Meeting will be held in Covington, Kentucky at the Marriott Hotel at River Center on Nov. 8-9, 2002. Covington is a suburb of Cincinnati, Ohio across the Ohio River.
The OVAC meeting is an opportunity to learn how to become effective spokespersons to support federal funding cancer research. Training sessions will include discussions about the federal appropriations process, descriptions of the agencies involved in cancer research, detailed presentations on how advocates can be more effective by working together, and tips on how to develop relationships with your congressional offices.
This is a great opportunity for advocates in Ohio, Indiana, Kentucky, Pennsylvania, southern Michigan, eastern Illinois, northern Tennessee, and Virginia to meet other advocates and develop working collaborations. For those from other states who want to fly to the meeting, the nearest airport is the Cincinnati International Airport (CVG).
The meeting is open and free of charge to all myeloma and cancer advocates. Attendees will only be responsible for their lodging. The Marriott at River Center is offering rooms for $99 per night. The meeting is scheduled to begin with a dinner and reception on Friday evening, Nov. 8 and a full day sessions on Saturday, Nov. 9.
Online registration instructions will be posted in next week's Myeloma Minute. If you have any questions, please contact Greg Brozeit at greg.brozeit@worldnet.att.net.
In the meantime, please continue to contact your members of Congress to insist on action on this year's appropriations bills.
Quality of Life Update:
- We received a request for information on personal safety for those of you who may live alone. Here are some tips for safety-proofing your home:
- Make sure living areas are well lit.
- Keep the floor clear. Reduce clutter and keep telephone and electrical cords and other small items out of walkways.
- Keep the floor clean. Clean up grease, water and other liquids immediately. Don't wax floors.
- Keep all electric appliances away from sink areas. Unplug small appliances when not in use. Check all electric cords to make sure they're not frayed. Replace as needed. Never overload extension cords.
- Never cook with long, loose sleeves. If you're stirring a pot on a stove, for example, a loose sleeve can easily catch fire.
- Keep a fire extinguisher handy in the kitchen. Check the gauge periodically to make sure it's still full and make sure you know how to use it if there ever is a small kitchen fire.
- Use non-skid rugs to reduce your chance of slipping on smooth floors. Check the backings on the rugs periodically to see if they need to be replaced.
- Install handrails in stairways. If you already have railings, check them, both inside the home and on outdoor stairs, to make sure they're sturdy. Check all outdoor stairs for loose or broken edges and repair as needed.
- Have grab bars in the bathroom (by toilets and in tub/shower.) Use non-skid mats in the bathroom and in the tub and shower. Set the temperature of your water heater below 120 degrees to avoid scalding.
- Be aware that climbing and reaching high places will increase your chance of a fall. Use a sturdy step stool with hand rails when these tasks are necessary.
- Follow medication dosages closely. Using medication incorrectly may lead to dizziness, weakness and other side effects. These can all lead to a dangerous fall.
- Keep at least one phone in the house on a table that's low enough to the ground, so you could reach it even if you were to fall and couldn't stand back up.
- When Slips Get Serious: The Basics on Fall-Proofing Your Home
- IMF Support Group Leaders Retreat
October 11, 2002 in Durham, North Carolina
If you are a support group leader, this is your chance not only to gather tips and information from some real pros, but most importantly learn from and share experiences with fellow group leaders, some from as far away as Japan!
Facilitators include
- Carol Svec, speaking on the art of gathering information after a diagnosis
- Greg Pacini, who will help you help others manage anxieties and grief
- Rachel Schannberg, who will speak on understanding the dynamics of your group
- Our own Dr. Brian Durie, who will address options and access in the world of clinical trials.
If you have a topic of particular interest that you would like us to feature, if you are starting a support group, or if you are in a support group that is doing something to make a real difference in the lives of mutiple myeloma patients and their families and friends, let us know.
Items of Interest:
- Expert Opinions on Multiple Myeloma
A multimedia, CME-accredited program for physicians with the chance to see world-renowned myeloma specialists sharing their knowledge, discussing treatment choices, and comparing their perspectives on controversial issues in multiple myeloma and related diseases.
- Announcing the IMF's new MM Interactive
An exciting new way for myeloma patients to get involved at patient seminars.
- Bank On A Cure™
The IMF is pleased to announce the launch of Bank On A Cure™, a groundbreaking international collaborative effort to establish a method to find new treatments while customizing care for current patients.
- Myeloma At The Movies.
It has been our goal to bring our Patient & Family Seminars to people around the country who might not be able to attend an actual meeting, so we have set up a video lending library....
- The OMNI Network matches oncology nurses chosen from the local community with cancer support groups. They present a 45-minute interactive educational session to the group that includes discussion, patient materials, and resources. Take advantage of this collaborative effort between the IMF and Oncology Nurses and schedule a session for your support group.
- Myeloma Matrix
The IMF is committed to providing a total overview of the "future" as well as the current state of myeloma treatments. The Myeloma Matrix provides updated information about drugs beginning with pre-clinical developments and tracks drugs as they proceed through Phases I III of clinical trials, drugs that have been FDA approved, and information on trials that are being conducted by NCI- sponsored cooperative groups as well as other myeloma study groups. Call the toll-free hotline (800) 452-2873 for your copy.
Important Dates to Remember:
Clinical Trials:
To help you find trials currently open for enrollment, the IMF has entered into partnerships with HopeLink and EmergingMed. Through these services, you can match a trial 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 material from the National Cancer Institute.
Exciting Opportunities:
- Shop for the Cure:
Many of the finest e-tailers on the internet will make a donation to the IMF if you enter their websites via our "Shop for the Cure" page and then make a purchase. If you shop on the internet, it's a great way to help the IMF. Just visit our "Shop for the Cure" page at http://shop.myeloma.org
- Multiple Myeloma Quilt of Courage
All the squares for the first quilt have been sold! We are now taking orders for the second quilt. The deadline has been extended to be October 15th.
Help Us Help Others...
As a non-profit organization, the IMF is completely dependent on the support of our members. Please consider showing your support by making a tax-deductible donation today. 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.
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