Southern Nevada Multiple Myeloma Support Group

Meeting Minutes – June 23, 2007

Green Valley Library, Henderson, NV

 

Attendees:

Duane & Bernice Klein Alex Vandivier

Dianne West Yvonne Boland

Richard & Joan Gold Kelly Cox, IMF

Jerry & Lita Caedo

 

Opening

  • Duane Klein welcomed everyone to the first meeting of the Southern Nevada Multiple Myeloma Support Group and introduced Kelly Cox, the International Myeloma Foundation’s Director of Support Groups Outreach.

IMF Support

  • Kelly supplied us with a wide variety of IMF resources and provided a brief history of the IMF. Be sure to register with the IMF at www.myeloma.org and sign up to receive their valuable email updates.
  • The next Los Angeles Patient & Family Seminar will be held in January or February 2008. Kelly suggested that a future symposium could possibly be held in Las Vegas.
  • Valuable support is available by calling the IMF Hotline: 800-452- CURE (2873).
  • Kelly’s contact numbers are: office - 800-452-2873 x233 or cell - 310-429-0521.

Name of Support Group

  • The group briefly discussed potential name options, but felt that using “ Southern Nevada” Multiple Myeloma Support Group will allow us to include a broader region of local patients.
  • Duane mentioned that he was contacted by someone at Luke Air Force Base in Arizona who would like to have an email connection to our group.

Meetings

  • Meetings will be held on the third Saturday of each month at 11:00 a.m.
  • 134 meeting flyers were mailed by IMF to patients and caregivers in our area and Duane emailed the flyer to all local oncology offices.
  • Kelly suggested that we also consider group outings, such as putt putt golf, for when we just don’t want to talk about MM.
  • Duane shared the difficulty he encountered trying to find a location for today’s meeting. Station Casinos was suggested as a future possibility since they have meeting rooms available at locations throughout the valley. Dianne volunteered to contact them to see whether they would provide a meeting room free of charge. Yvonne reminded us that due to union contracts, we might run into a problem with bringing in refreshments. Richard & Joan volunteered to hold next month’s meeting at their home.
  • Kelly suggested we rotate roles within the group so meetings can take place regardless of who attends. Duane put in a huge effort to get this group started, but he said he wants this to be OUR group – not “Duane’s” group.
  • Duane’s oncologist, Dr. Dao, is willing to address the group at a future meeting. Kelly suggested we give ourselves a few meetings to get organized and to increase our attendance before having a guest speaker. We will tentatively have Dr. Dao speak at the September meeting.
  • Kelly suggested that we may want to allow 15 minutes prior to each meeting for caregivers and patients to have separate discussions to allow any necessary venting so it doesn’t impact the actual meeting. He also suggested having a meeting dedicated to “bitching and moaning” when needed.

Goals

  • Keep people informed and up-to-date.
  • Be consistent so people don’t show up and find there is no meeting.
  • Be respectful when sharing information to allow time for all to speak

Mission Statement

  • Dianne read the mission statement of the North Texas Myeloma Support Group. We decided to hold further discussion until our next meeting.

MM Stories

  • Each of the inaugural SNMMSG attendees shared their MM story. While each has had a very different journey, there were many common threads.
  • This time provided the opportunity to offer suggestions and share resources with each other.

Questions

  • Kelly requested a list of our oncologists and primary care physicians so he can provide those names to the IMF Hotline for reference. [NOTE: Dianne has provided Kelly with the list of oncologists; PCP names will be gathered at next meeting.]
  • Richard asked whether it was critical to see an MM specialist. He will call the Hotline and report back at our next meeting.
  • Suggested topic for future meeting: Keys to dealing with your insurance provider
  • Kelly will send us two power point presentations for “sharing notes”. Copies will be provided at the next meeting.

 

NEXT MEETING

 Saturday, July 21, 2007

11 a.m. to 1 p.m.

Home of Richard & Joan


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