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October 2002 Volume 5, Issue 3:
IMF Support Group Leaders’ Retreat 2002
By Nancy Baxter
10.30.02

Duke University's beautiful R. David Thomas Executive Conference Center was the site of the IMF's third annual Support Group Leaders' Retreat, held the weekend of October 12th. Leaders from Alaska, Arizona, Delaware, Florida, Massachusetts, North Carolina, Pennsylvania, Wisconsin, Nova Scotia, and Japan attended, proving that the reach of the IMF is truly international. The hours were long, but the rewards were great for all who participated.

Friday night's reception and dinner gave participants a chance to meet and greet over a delicious meal. The guest speaker was Betsy Patterson, an experienced oncology nurse practitioner and herself a 17-year survivor of lymphoma. Her topic, "Planting the Seeds of Survivorship," was a perfect way to kick off the weekend and provided good, practical tips to myeloma patients and caregivers.


Curt and LouAnn Brooks, with Betsy Patterson

Saturday's session was quite full and very productive. Wisconsin leader Chuck Koval gave a presentation on "How to Get Your Group Going." This was followed by two experienced facilitators from Duke's Cancer Patient Support Program, Rachel Schannberg and Tracy Berger, who gave concrete and practical tips on the art of group facilitation and how to "Manage the Dynamics." A question and answer session allowed more exchange of information between all participants. Next we heard from Carol Svec, who gave a comprehensive talk on "The Art of Gathering Information." This well-received talk provided leaders with good methods of helping their members find reliable information and then sift through that information.


Midori Horinouchi and Ikumi Okubo of the IMF (Japan)

After a lunch break (and the food at the center was good and abundant!), we reconvened to hear Dr. Brian Durie discuss "Clinical Trials —Access and Options." Using one of the current Velcade trials as a "case study," Dr. Durie de-mystified the clinical trials process and solicited feedback from the group on what type of clinical trial information their members needed and how they would like to receive it. The IMF will use the results of this discussion to continue to improve how we share information about clinical trials with our patients.


Cindy and Bob Feltzin

The remainder of Saturday afternoon was led by Greg Pacini, who was back by popular demand. Greg's focus was on the "psychosocial" aspects of leading a group and the dynamics that dealing with a difficult disease like myeloma can create within the group. The topics of anxiety and grief were explored through song, discussion and action plans. It was both emotional and healing for the participants.


IMF Advocacy Consultant Greg Brozeit with Debbie Exner

Saturday night's dinner was again delicious and everyone enjoyed a chance to chat informally and relax. We also got a chance to hear from Dr. Durie about IMF research initiatives, including Bank on a Cure. Greg Brozeit updated everyone on IMF advocacy efforts and gave a brief civics lesson on the legislative process and how to use that process to increase spending on myeloma research.

Sunday morning's "Open Forum" gave the group a chance to discuss any unfinished business and to brainstorm specific problems with which leaders needed help. It was agreed that we should move next year's meeting back to the summer, if possible, and that Duke's facility was extraordinary. The retreat was a memorable and rewarding experience for all participants.


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