Letter from the IMF President & Chief Executive Officer

Dear Friends,

I wanted to take a moment to share how the IMF’s support programs have been instrumental in my journey as a myeloma patient. In 1995, when I was first diagnosed with myeloma, I felt lost and overwhelmed. The words “You have cancer” are devastating. I was thrust into an unfamiliar world of medical terminology and treatments. I didn’t know where to turn for support and information. And then I found the IMF.

The IMF’s educational resources increased my health literacy and got me started on a path to becoming a patient who is capable of playing an active role in my own medical care, and of participating in shared decision-making about my care with my doctors. The IMF’s network of support groups gave me a sense of community and fostered a feeling of empowerment even in those early day of my treatment journey. I met remarkable individuals – patients with myeloma who inspired me to follow their example of “paying it forward” by becoming an advocate for the myeloma community.

Support groups have been an essential part of my journey. They provide a safe space for patients to share experiences and emotions with others who truly understand what it’s like to live with myeloma. I’ve made lifelong connections with others in my support group, and the support and encouragement we provide each other are invaluable. The IMF and the support group network also provide invaluable resources to our care partners – caregivers who walk alongside us and help us cope, even while trying to cope themselves with our health-related changes.

The IMF’s support of patients, care partners, and myeloma advocates extends far beyond the borders of the United States. A decade ago, the IMF founded what evolved into the Global Myeloma Action Network (GMAN) and has since steadily supported the capacity-building of myeloma advocacy organizations across the world. While there is still much to do, the positive impact made by GMAN’s member organizations has grown exponentially over the years. In June 2023, the 10th annual GMAN Summit convened in Germany, and you can read more about it beginning on page 14 of this edition of Myeloma Today.

In 2006, the IMF founded the Nurse Leadership Board (NLB) to improve the nursing care and self-care of patients with myeloma. The NLB represents oncology nurses who are experts in myeloma at leading medical centers. On page 12 of this edition of Myeloma Today, you can read about the 17th annual symposium held by the NLB at the 48th Annual Congress of the Oncology Nursing Society (ONS). The work of the NLB contributes to improved patient care. Everything that the IMF does is with the patient in mind.

Another one of the most impactful IMF initiatives is the International Myeloma Working Group (IMWG), which emerged from the IMF’s Scientific Advisory Board of myeloma experts established in 1995, coincidentally the year of my diagnosis. The IMWG is the most prestigious organization for myeloma researchers, with nearly 300 members who help generate a wealth of knowledge about myeloma. The IMWG conducts collaborative research to improve outcomes for myeloma patients while providing scientifically validated consensus guidelines for the treatment and management of myeloma and its sequelae. The first of many IMWG consensus guidelines was published in 2003. You can read about the 14th annual IMWG Summit beginning on page 5 of this edition of Myeloma Today.

It has been incredibly inspiring to witness the progress being made in the field of myeloma and to be a part of the conversation. I believe that the IMF’s support of the patient community and of the scientific and clinical professionals who are improving patient care is crucial to patients with myeloma living longer and better lives. As a patient, I am truly grateful for the work that the IMF does and proud to be a part of the IMF team.

Yelak Biru Myeloma Patient IMF President & CEO