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October 2000 Volume 4, Issue 1:
Group Leaders Need Support, Too!
By Amy Nielsen Palumbo
The IMF held its first retreat for myeloma support group leaders on the Duke University campus in Durham, North Carolina
One of the goals of the IMF over the past year and a half has been to develop ways in which we could better assist our Support Groups, their members and leaders. Last December, Susie Novis and I were discussing this point. The result of that brainstorming session was the First Annual IMF Support Group Leaders Retreat.
The Retreat provided the Support Group Leaders the opportunity to meet one another, exchange ideas, participate in leadership and group dynamic training. In turn, the IMF learned how we can better support them and their groups. We hoped for a weekend filled with a lively exchange of information and ideas.
On July 14th, support group leaders and their guests, speakers and IMF staff arrived at the R. David Thomas Conference Center on Duke University's campus in Durham, North Carolina to participate in what turned out to be a most extraordinary weekend.

The weekend program began on Friday evening with guest speaker Barbara Held, Ph.D., Barry N. Wish Professor of Psychology, Bowdoin College, Brunswick, Maine. She spoke about her philosophy of life and her new book, Stop Smiling, Start Kvetching? A 5-Step Guide to Creative Complaining. When I met Barbara on a plane several months earlier, we discussed both her book and philosophy, which is that "life is hard". Barbara gladly accepted my offer to speak at the Retreat. I, on the other hand, did have a bit of hesitation? "How were these upbeat Leaders going to react to Barbara's ideas?" The presentation was a success and all participants welcomed Barbara and her philosophy with open arms. I think I am safe to say we all came away learning from Barbara that it's okay to feel bad at times and that you don't have to always "put on a happy face".

Saturday morning started bright and early with a packed agenda. Susie Novis and I posed a few simple questions. "What does a support group do? What could a support group do? What words best describe a support group?" Repeatedly, the responses were: friendship, empowerment, confidence, hope, and empathy. We then asked the participants to share their group's biggest success or proudest moment. Everyone had a different story but the overall theme was one of helping the myeloma community.

Next up was a presentation by Cathy Lebkuecher from the Atlanta support group entitled "Communicating with Group Members". Cathy offered some insights that have proven successful with her own group. She shared ideas on how to stay in contact with group members, disseminate a newsletter, and the simple yet effective practice of having nametags at meetings.

The next scheduled topic was the IMF Advocacy program. Bubs Tamlyn, a strong voice for the IMF in the advocacy arena, presented and moderated this session. Bubs' snazzy PowerPoint presentation got everyone excited and enthused. He stressed that advocacy is everyone's responsibility - if not us, who?
Marilyn Alexander from the Philadelphia group and Howard Walter from the LA group shared duties as presenters of the Fundraising portion of the agenda. Both provided ideas and shared some basic fundraising principles.

After lunch, the group re-convened for Deb Exner's presentation entitled "Patient not Passive". Deb, the daughter of a myeloma patient, has developed a personal mission about her mom's care - to promote a team approach to treatment and care. Deb shared how she has been able to fulfill her mission. Her idea of having a button that you could wear to the doctor's office, with "Don't overwhelm me" on one side and "Tell me all" on the other, was a huge hit.

Probably the most intense session was led by Greg Pacini, LPC, CGP, Vice President and Program Director at the St. Louis Wellness Community. Greg led an hour session on "How to Facilitate a Group," including tips on being a better active listener and keeping the group focused. He also informed us on the three levels which support groups progress through:

  1. General chit chat, basics;

  2. Medical knowledge exchange, support;

  3. Emotional exchange.

Then Greg moved into the role of a facilitator and used the group to demonstrate how it's really done. Words cannot adequately describe the emotions that were expressed during the next hour and a half when we learned how to cope with a loss in a group. That experience is etched in our memories and our hearts.

Stephanie Colman, Director of Community Relations and Public Affairs, followed Greg's presentation with an interactive session on public relations and awareness. We learned how to get the important story about multiple myeloma into the press. At the conclusion of Stephanie's presentation, we collectively summarized the day, identified action steps and developed a "working" mission statement - to empower patients through education, reach out to caregivers and give hope to families.

I have since received many comments from the participants about the weekend, including the following from Sol William Kushner, "This particular retreat was the most enlightening and enthralling that I ever attended." My thanks to Sol and all the other participants who made this retreat so special.

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