During the last week of October, I had the pleasure of being a guest speaker at the annual multiple myeloma seminar in Seoul, South Korea hosted by the Korean Blood Cancer Association (KBCA) and the Korean Multiple Myeloma Working Party(KMMWP), a division of the Korean Society of Hematology (KSH). This was the second time that the International Myeloma Foundation (IMF) had the honor of participating in this meeting to address myeloma patients in Korea, and the opportunity to meet with the team of dedicated physicians and members of the KBCA staff.
More than 250 patients and family members listened to presentations by the KMMWP on transplant, clinical trials, frontline therapy, and relapse. Fortunately, they were also excited to learn about advocacy, which is where I came in. While it has no direct translation in the Korean language, I explained that the word advocacy applies to many activities that meet the dictionary definition of “the act or process of supporting a cause.” This can mean educating others about the disease, raising myeloma awareness in the community, or telling your story as a patient to the media or policymakers to illustrate the need for continued innovation in blood cancer research and access to treatment for patients in Korea.
The message seemed to resonate with the audience as many patients approached me after the meeting to thank me for my participation and compassion for patients in Korea. I also learned that there is a lot of online advocacy activity already happening through a myeloma patient group affiliated with KBCA, the Korean Federation of Multiple Myeloma Patients (KFMMP). I had the opportunity to meet with them, learn more about their organization and discuss ways in which we may collaborate to improve the circumstances for patients in Korea. My hope is that there will be much more to report on that effort in the near future.
A brief history of the KBCA: The Korean Blood Cancer Association is a nonprofit organization that was established in December 1995 in Seoul, South Korea with the mission of supporting patients through education, consulting, support programs, and financial assistance. The association offers various programs that are similar to ours at the IMF and they are run by a compassionate group of patients and social workers. KBCA also started the Hope Medical Information Center, which is run by nurses and social workers, and offers support programs to patients and their families. It is the only center of its kind in Seoul where patients can come to learn, meet other patients, get emotional support, and participate in programs including patient mentoring, medical information sessions, yoga therapy, mind healing, and nutritional/cooking classes, to name a few. I was very impressed with the number of classes and programs offered and how they aim to treat the whole patient, physically, mentally, emotionally, and spiritually.
While we may come from very different parts of the world, it was quite clear that the passion and dedication that we have for the myeloma community is the same from one side of the world to the other, and we will all continue to work tirelessly to support patients and their families battling myeloma.
I’d like to sincerely thank the staff at KBCA, Hope Center, and the members of the KMMWP for their hospitality, their compassion for patients and for the amazing opportunity to be a part of their outstanding work!
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