Uniting Voices, Connecting Lives: Empowering Myeloma Communities Together
90 leaders of 74 myeloma support groups gathered for the 24th annual IMF Support Group Leaders Summit
By Robin Tuohy, IMF Vice President, Support Groups
Over the span of 24 years of remarkable growth and evolution, the IMF has brought together leaders of myeloma support groups for an annual event that increases myeloma knowledge, fosters connections, and nurtures the hope that participating leaders can then take back to the patients and care partners in their local myeloma communities. The IMF Support Group Leaders Summit unites minds and connects hearts, providing a platform for leaders to delve into critical myeloma updates, share invaluable resources, and gain insights and skills to excel in supporting their local groups.
Togetherness and empowerment
The 2023 IMF Support Group Leaders Summit embodied the spirit of togetherness and empowerment that defines our community. We welcomed 90 representatives of 74 support groups from the United States and Canada to the event held in Houston, Texas. There were 27 first-time Summit attendees and 63 returning myeloma support group leaders. Upon arrival, participants received a welcome bag filled with resources and goodies, including a variety of T-shirts with unique messages chosen by the leaders themselves!
The IMF has introduced new ways for group leaders to connect with the IMF Support Groups team that is dedicated to their success, as well as to interact with their peers. In the lead-up to the Summit, the IMF hosted five virtual working group meetings, each dedicated to a specific topic. Such sessions have proven to be instrumental to fostering collaboration and making the Summit experience even more enriching.
The in-person 2023 IMF Support Group Leaders Summit was held on October 5-8. The Summit opened with a focus on “Connectivity.” We kicked off the program with a fun video on “The Power of We” and the philosophy of perseverance and resilience represented by the word “Believe,” both inspired by the TV series Ted Lasso. The energy in the room was so uplifting, and the laughter continued throughout the entire Summit.
The meeting agenda for Friday and Saturday focused on sessions to educate, engage, and empower participants, all leading to increased hope. Dr. Brian G.M. Durie (IMF Chairman of the Board & Chief Scientific Officer) delivered updates on the cutting-edge “Science Behind the Cures,” as well as myeloma testing, and novel interventions and treatments with the IMF’s signature research program, the Black Swan Research Initiative® (BSRI®). In the IMF’s ASCENT clinical trial, 84% of study participants have achieved the status of minimal residual disease (MRD)-negativity, not even one myeloma cell found in sampled bone marrow plasma cells!!
Summit attendees also heard from Yelak Biru (myeloma patient and IMF President & CEO) about “Navigating the Future of Myeloma Care: Strategic Direction of the IMF & Industry Trends.” The day’s topics also included the following highlights:
- “Tips for Navigating Insurance & Medical Bills” by Joanna Fawzy Doran, Esq. (CEO, Triage Cancer),
- “Hot Topics in Myeloma” by Joseph Mikhael, MD (IMF Chief Medical Officer),
- “Health Disparities in Myeloma and their Drivers” by Joseph Mikhael, MD (IMF Chief Medical Officer),
- “Support Group Leadership, Burnout & Resilience” by Susan Dunnett, PhD, (University of Edinburgh),
- “The Interconnectedness of our Dietary Habits with Quality of Life & Outcomes in Myeloma” by Urvi A. Shah, MD (Memorial Sloan Kettering Cancer Center),
- “Emotional Freedom Techniques” by Rebecca Rooney, PhD (Clinical Psychologist, Retired U.S. Army Lt. Col.),
- “Demystifying the CAR T & Bispecific Experience” Patient & Care Partner Panel Discussion.
A wellness excursion
To add to all the new information and support offered at the 2023 Summit, we incorporated an offsite wellness excursion to the Houston Botanical Gardens. Leaders had the opportunity to network while taking part in the guided walking tour through the unique natural environment of plant conservation, followed by an al fresco dinner under the stars.
In conclusion
The Summit has a special part in my heart. My first experience with the IMF Support Group Leaders Summit was in 2001, after my husband Michael was diagnosed and we were invited to attend as leaders of our local myeloma support group. Immediately, we knew that we found a community of others who understood our experience and who truly cared.
The Summit program takes months of dedication for my dear colleagues at the IMF to put together. It takes a village to make this magic happen. I would like to extend my special thanks to the IMF Support Group Team – Becky Bosley, Nancy Bruno, Kelly Cox, and Cecilia Romero – and to the IMF Meeting Planning Team for their diligence and care so that the Summit participants have the best and most enriching experience possible! The Summit is my favorite IMF program and I’m honored to be a part of it.
The 2023 IMF Support Group Leaders Summit was an invaluable learning and networking experience, which was made possible by educational grants from our partners Abbvie, Amgen, BMS, “Jack’s Cure Myeloma Education Grant,” Janssen Oncology, Karyopharm, Pfizer, Regeneron, Sanofi, and Takeda. MT
Visit myeloma.smugmug.com/SG/SGLS2023 to view more photos from the 2023 Summit, and contact the IMF Support Groups Team at email [email protected].
(This article was published in the 2024 Winter Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)