Myeloma Support Group Leader Voices at ASH 

By Robin Tuohy, IMF Vice President, Support Groups 

Every year in December, the Annual Meeting & Exposition of the American Society of Hematology (ASH) serves as a premier opportunity for researchers and clinicians to present and discuss the most exciting developments in the field of myeloma. Key opinion leaders in myeloma also have an opportunity to meet and interact at an annual breakfast hosted by International Myeloma Working Group (IMWG). No doubt, ASH is an important annual event for healthcare professionals. 

ASH is also an important annual opportunity for myeloma community leaders to share their “voices.” The IMF is committed to fostering interaction between the patient community and the myeloma experts. Every year, the IMF assembles a team of support group leaders who attend ASH in-person and/or virtually. Myeloma advocates who engage with and learn from the researchers at ASH then take their newly acquired knowledge back to the members of their local myeloma support groups. 

At ASH 2023, the IMF Myeloma Voices Team included 14 patient community leaders, 8 attending in-person and 6 participating through a virtual platform. Each team member made the most of this unique opportunity in an atmosphere of support and camaraderie. Below are just some of the insights they shared not only locally but also globally via social media hashtag #IMFASH23 on X (formerly Twitter) and Facebook, as well as through vlogs and blogs at ash2023blogs.myeloma.org: 

“In the last 20 years, 19 myeloma treatments have been approved by the FDA. With so many combination therapies and so many clinical trials, we have a better chance than ever before of providing the patient with an excellent treatment. Be your own best patient advocate!” 

– Jack Aiello, diagnosed in 1995, 18th year attending ASH! 

“Studying newer treatments in the real-world setting versus in a clinical trial means that many patients who would not have met the eligibility criteria for a clinical trial were able to receive these treatments.” 

– Sheri Baker, diagnosed in 2011 

“I’m so grateful to our sponsors for making it possible for myeloma support group leaders to attend ASH and bring it all back to our groups. I am better educated about the future of myeloma through this conference.” 

– Barb Davis, diagnosed in 2007 

“ASH wasn’t just about the formal presentations. It was also about the camaraderie formed in sharing moments with the IMF Myeloma Voices Team. Their passion for advocacy, their caring nature, and their ability to infuse even the most serious discussions with humor created an environment where growth was inevitable.” 

– Jessie Daw, smoldering multiple myeloma (SMM) 

“Past all the political cockamamie that goes on behind closed doors, everyone there TRULY is passionately committed to what they DO!... I certainly know they’re TRULY investing in DEI issues with sincerity!... Special shoutout to the whole IMF team, it was an honor working alongside everyone!” 

– Oya Gilbert, diagnosed in 2017 

“My top 3 categories from ASH 2023 included real-world retrospective studies, changes to standard of care for newly diagnosed patients, and new testing methods that could greatly reduce the number of bone marrow biopsies needed.” 

– Linda Huguelet, diagnosed in 2010 

“I want to be able to eliminate the fear of being diagnosed with multiple myeloma and living with it by shining a light on it.”  

– Diane Hunter, diagnosed in 2017 

“This was my first year attending ASH. I am so thankful for this opportunity so that I can help educate and bring more hope and encouragement to the multiple myeloma community.” 

– Adrienne Moore, diagnosed in 2020 

“Time is fleeting. Time is precious. Time is not always on our side. But with time, our tireless myeloma researchers and doctors remain dedicated to finding new and better treatment options that extend our time to the next treatment and enhance our time from diagnosis to hope!” 

– Michael Tuohy, diagnosed in 2000 

“How wonderful to see so many amazing scientists and myeloma specialists working so hard… to help treat myeloma patients move beyond managing myeloma to celebrate the gift of each day ahead!” 

– Jill Zitzewitz, diagnosed in 2017 

I’m sincerely grateful to the IMF’s industry partners BMS, Janssen, Karyopharm, Regeneron, and Takeda for sponsoring the Myeloma Support Group Leader Voices program at ASH 2023. To learn about research presented at ASH 2023, read the overviews by Dr. Brian Durie (see page 6) and Dr. Joseph Mikhael (see page 9). MT 

Please contact Robin Tuohy at [email protected] or visit myeloma.org/support-groups for information about joining a local myeloma support group or launching a new one in your area. 

(This article was published in the 2024 Winter Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)