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August 2003 Volume 5, Issue 7:
IMF Support Group Leader Retreat
By Chuck Koval
Forty support group leaders, co-leaders, representatives, and IMF staff participated in the fourth annual IMF Support Group Leader Retreat, held June 27-29 at Duke University in Durham, North Carolina. The retreat lived up to the expectations of reg

Forty support group leaders, co-leaders, representatives, and IMF staff participated in the fourth annual IMF Support Group Leader Retreat, held June 27-29 at Duke University in Durham, North Carolina. The retreat lived up to the expectations of regular attendees of past retreats. This was the first retreat experience for nearly half of the group. Judging by their reactions, we expect to see them regularly at future IMF retreats.

(l-r) Judith Hartig-Osanka, Roger Buffett, Pat Koval,
Chuck Koval, Jane Buffett

The Friday evening kick-off started with a first class welcome reception. A wonderful dinner served in the tradition of a fine hotel followed. In a lively welcome address, Susie Novis gave us details on the new IMF initiative, "Bank On A Cure." This may prove to be one of the most significant contributions to the future management of myeloma. After much excitement, the travelers were ready to retire and prepare for the Saturday schedule.

On Saturday morning, Susie set an upbeat tone for the meeting with a brief history of the retreats, progress in the management of myeloma, a look at new programs, and the role of support groups. She highlighted the availability of Velcadetm, the first new drug for myeloma in many years, and how IMFers helped gain rapid approval of this drug.

In keeping with the successful format of previous retreats, the first half of the morning was dedicated to group introductions and expectations each group brought to the retreat. After the open discussion, "What Works – What doesn't", it was time for the first of the invited speakers.

Patty Delaney of the Food and Drug Administration described her role within the FDA. Due to plane difficulties, Patty had to use the telephone to share her message. Thanks to the quick work of Mike Katz and staff, the PowerPoint slides Patty prepared were easily shared with the attendees. The presentation was an insightful look at the role of the FDA from the start of the drug approval process, through approval, and follow-up post-approval drug use. She clarified some of the limitations faced by the FDA throughout the process, particularly the inability to respond due to many legal restrictions.

Next, Dr. Brian Durie provided an update on the International Myeloma Workshop held in Salamanca, Spain. He was able to place a perspective on the hot issues in myeloma research as well as those areas that appear to be losing favor as additional information is compiled. Several very hopeful concepts were presented that we will likely hear more about in the near future.

The first afternoon session focused on loss and grief issues facing support groups. Since most myeloma support groups do not have professional facilitators, it can be difficult to handle the loss of fellow members.

Susie Novis and Mike Katz
Joanna Parker, LPC, Bereavement Services Coordinator, Duke University, led a discussion helping understand the various kinds of grief and loss. She assisted the group in defining grief and the ways it might be expressed. She explained "Anticipatory Grief", a type that occurs when individuals focus on future fears, i.e., debilitation, loss of ambulation, economic problems, etc. She stressed the importance of healthy anticipatory mourning by outlining the factors necessary for it to be a healthy experience. Joanna offered some coping ideas for support groups at times of loss.

Jon Seskevich RN, BSN, BA, CHTP Nurse Clinician, Duke University Health System focused on, "The Vital Quartet: Safe, Sane Complementary Therapies for Inquiring Patients." Jon focused on the negative impacts of stress and identified a variety of stress management techniques. Stress management gains increased importance when we realized that 50% - 80% of all diseases are stress related. A ten-minute relaxation was said to have the impact of a half-hour nap! You can access much of what Jon presented by visiting his website at www.managestressnow.com.

The pre-dinner cocktail reception provided a nice transition between the work of the day and the anticipation of a relaxing dinner. Following dinner, Greg Brozeit presented an interesting discussion on "Cancer and Public Policy: The Importance of Advocacy." His remarks were punctuated with a variety of experiences in his years working in the offices and hallways of Washington. He pointed out the value of advocacy, particularly if done at the right time and in support of a visible project. A good share of the viability of a project lies in the eyes of what congressional representatives and senators feel they can support. His best example of this is the IMF participation with more than forty groups in the One Voice Against Cancer coalition. Our retreat ended late Sunday morning after an exceptionally well-prepared and presented discussion on the development of Velcadetm by Millennium Pharmaceuticals Medical Director, Dr. Beth Trehu. Her many years of experience as a practicing oncologist nicely complemented her new role.

Ken and Mary Makowka, Robin and Michael Tuohy

I am now at the point of gathering our thoughts from the retreat, thinking about applications of what we shared on return home, and looking to next year with great anticipation for the fifth annual IMF Support Group Leader Retreat. I hope that more multiple myeloma support group leaders will plan to join us in 2004. Special thanks to Nancy Baxter and the IMF staff who worked on arrangements for this retreat. We are grateful to the IMF for this helpful and generous support.

Note: Chuck Koval, a co-leader of the Wisconsin Multiple Myeloma Support Group, can be reached via email at cfkoval@wisc.edu. For a list of multiple myeloma support groups throughout the U.S. and around the world, please contact the IMF.

(l-r) Bill Hollowell, Sharon Madagan, Deborah Eller,
Nancy Baxter, Cindy and Bob Feltzin

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