July 2010 Meetings in Minnesota

Wednesday, July 14, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Our speaker will be Kristen Detweiler Short, C.N.P., of the Mayo Clinic. Dr. Detweiler Short works with Dr. Lacy and other doctors there and is very knowledgable. This is a precious opportunity to get answers to questions about myeloma, treatments, and drug trials.


Saturday, July 17, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.


Saturday, July 17, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Libby Gordon Addresses St Paul Group

Meeting of the St Paul Myeloma Support Group
June 9, 2010

The speaker was Libby Gordon from the Leukemia and Lymphoma Society (LLS). The LLS covers all blood cancers, including myeloma, and is a very robust organization with a variety of programs. Locally, the LLS office is staffed by 29 fundraisers and Libby, who is the Patient Services Manager.

• Financial Grants:
  
  
  • Every patient can receive $150 each year by submitting a one-page form, no income requirements. This is no longer a reimbursement program.
    
  • The LLS budget year ends June 30, so apply before July 1 and then again in July or later.
  
  
• Co-pay assistance:
  
  
  • This reimbursement program does take income into consideration.
    
  • Patient must have insurance and meet income requirements.
    
  • It can pay up to $10,000 per year.
    
  • Usually they pay the co-pay directly.
    
  • The application may be made on-line or by the phone.
  
  
• Other programs for patients:
  
  
  • There are many educational booklets, either on-line or by mail. Cancer, nutrition, finances, ...
    
  • LLS does lots of teleconferences on various subjects.
    
  • "First Connection:" This program matches a patient with another myeloma survivor - a mentor, more or less. A First Connection can be requested on line or by phone.
    
  • Information resource center, a toll-free hot line for answers to any questions. They can look for appropriate nearby clinical trials, support groups, and more, including medical questions. They can also answer financial questions. They have voice mail - you can leave a question 24/7.
    
  • There is a quarterly newsletter.
  
  
• Fundraising: LLS does not actively solicit funds from patients, but anyone might especially enjoy "Light the Night," September 26 at the new Target Field. It includes illuminated balloons, various colors, with survivors white, support red, etc. Festivities begin at 5:00 pm, the walk at 7:00, maybe a mile, inside the stadium.

Thanks to Libby for her presentation, and thanks to the LLS.

June 2010 Meetings in Minnesota

Wednesday, June 9, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Libby Gordon of the Leukemia and Lymphoma Society (LLS) will be our speaker. The LLS supports the battle against myeloma and other blood cancers.


Saturday, June 19, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.


Saturday, June 19, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

May 2010 Meetings in Minnesota

Wednesday, May 12, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Lauren Clark/Jennifer Feinber, Celgene Corp will be speaking.


Saturday, May 15, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Dr. Brian McClune, Assistant Professor of Hematology Oncology/Transplant,
University of Minnesota is coming to speak and answer you general question on Myeloma, transplants and research studies at the U of M.

In addition, Lauren Clark, Patient Support Coordinator from Celgene, will come to answer any questions regarding co-pay reimbursements.

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.


Saturday, May 15, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

April 2010 Meetings in Minnesota

Wednesday, April 14, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Special guest: Gayle Parizino, RN, MA, CPNP - Certified Massage Therapist.


Saturday, April 17, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site


Saturday, April 24, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Libby Gordon, from the Leukemia & Lymphoma Society, will discuss drug co-pay programs, upcoming events, seminars, etc.

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.

March 2010 Meetings in Minnesota

Wednesday, March 10, 2010:
1:00 to 3:00 pm
Family Means Center
1875 Northwestern Ave S
Stillwater, MN 55082
MAP

Helen Healy, ND (Naturopathic Doctor), has been invited to speak on any of these issues:

• Fatigue from myeloma and its treatments;
• Nutrition;
• Inflammation and how it relates to cancer; and
• Neuropathy.

Dr. Healy is an informative, energetic, and inspirational speaker.


Saturday, March 20, 2010
10:00 am to 12:00 noon
Methodist Hospital Cancer Center Conference Room
6500 Excelsior Blvd.
St Louis Park, MN
MAP

Park in the Orange Ramp at the BACK (northeast side) of the hospital, take ramp elevator to 1st floor, follow the hallway, find the conference room on the right before the big curved stairway.


Saturday, March 20, 2010
10:00 am to 12:00 noon
Gift of Life Transplant House
705 Second St SW
Rochester, MN 55902
507/288-7470
MAP

Snacks, sharing, and always a representative from Mayo Clinic.

Rochester group's Brochure
Rochester group's MMCF Web Site

Second Level of Advocacy

The International Myeloma Foundation has undertaken a major advocacy initiative, to convince the U.S. Congress to address several issues crucial to cancer patients, including:

• Affordable access for as many people as possible;
• Elimination of the barrier of "pre-existing conditions; and
• Continued investment in research.

Here is the full Statement of Principles.

This is the right time, while health care is up in the air.  The initiative now has two levels:

1. Writing:

We write letters to our congresspersons and senators. It is made easy on this IMF web page: Enter your zip in Write to Congress, then on the next page, click "Write to ALL of your representatives with one click." Please do this. It is SO easy to do.

2. Meeting with our elected representatives:

This is the IMF's newest and potentially most-effective initiative. Senators and congresspersons all have offices in their home districts, and we can make appointments to visit them or their staff person. The IMF has scheduled two one-hour web-based seminars to teach us how to do this in a manner most likely to achieve a result:

• Tuesday, February 23, 1:00 pm EST (12:00 CST); and
• Thursday, February 25, 1:00 pm EST (12:00 CST)

Then we will visit our representatives during myeloma awareness month, "March Against Myeloma."

To take part in the web seminars, email Meghan Pullarn at IMF or call 410-252-3457. She'll be glad to hear from you.