Nearly 100 myeloma support group leaders gathered in Dallas, Texas over the weekend for the International Myeloma Foundation’s 15th Annual Support Group Leaders Summit. Here, people with the compassionate spirit characteristic of patient support group leaders get a chance to recharge their batteries as they draw strength and encouragement from like-minded souls, and learn new skills to take back home.
“During the rest of the year, these leaders give their all to their myeloma support groups,” observed Robin Tuohy, IMF Senior Director of Support Groups, “but at the Summit, they’re on the receiving end.”
Robin and the IMF team plan the agenda for each Summit months in advance, focusing on the needs of support group leaders from around the country and, this year, from around the world. The 2014 event was jam-packed with sessions offering the latest news about myeloma treatments, a panel discussion of clinical trials, a workshop exploring the best practices for running a support group, a popular computer tutorial, and updates from IMF President Susie Novis and IMF Chairman Dr. Brian Durie on the exciting progress of the IMF’s Black Swan Research Initiative®.
“As a ‘newbie’ I felt welcomed and nurtured by everyone at the Summit,” said Susan Benjamin, a support group leader from Los Alamos, New Mexico. The Summit sessions, she added, will greatly enhance her skills as a support group leader.
During the weekend, Summit attendees like Susan were divided into working groups with topics such as Caregivers, Outreach, Technology, Agenda/Meeting Planning, and Sustainability of Group. The curriculum was tailored to the specific needs of a support group – whether that group is in a rural or urban setting, is well-established or just getting off the ground, has just a few members or attracts a standing-room-only crowd.
Each group has different needs, Robin explained. For example, the IMF offers a Virtual Speaker Bank resource, which is really valuable for groups located in remote areas too far from major medical centers or myeloma experts. The Speaker Bank consists of two DVDs filled with IMF’s important myeloma video content, from #AskDrDurie episodes to the latest International Myeloma Working Group (IMWG) Conference Series “Making Sense of Treatment” panel discussion, recorded live at the IMWG meetings. The Virtual Speaker Bank is also available on the IMF Support Group Leader Toolkit App, accessed by leaders via iPads donated to them by the IMF two years ago. The app is continuously updated with information specific to leaders to support their local groups.
At the Summit, representatives from pharmaceutical companies Celgene, Millennium, and Onyx, shared information about myeloma clinical trials and patient support programs, which the leaders can bring back to their own local communities so their members can have access to these resources. Three myeloma patients, Jack Aiello, Mike Katz, and Dr. Jim Omel, spoke about their experiences participating in clinical trials. The goal of their talk, they said, was to clear up the myths surrounding clinical trials and explain why it’s important to participate. A robust Q&A followed.
UK researcher Susan Dunnett conducts a very different kind of research. She gave a presentation about her study of patient-caregiver-led support groups, which was supported by a research grant from the University of Edinburgh. Such models, she pointed out, are unique in the support group arena, as most patient support groups are led by social workers, hospitals, or healthcare workers. The patient-caregiver-led support group is a model for the world, she said, a statement with which the attendees heartily agreed.
It wasn’t all research and science at the IMF Support Group Leaders Summit, though. Support group leaders were invited to partake in tai chi lessons, an innovative way myeloma patients might combat the stress that accompanies serious illness. Response to the lessons was overwhelmingly positive. “Maybe they’ll go home and add tai chi as a component in their support groups,” said Robin. “We have to think outside the box.”
Perhaps the most heartfelt element of the IMF Support Group Leaders Summit this—and every—year is the forging of lifelong bonds with fellow leaders.
“People call it the best family reunion they ever attended,” said Robin. Best of all, when they go back home, they can call their new best friends and connect with someone who can offer them support.