Empowering Patients

Pictured here in the summer of 2019, the IMF Nurse Leadership Board is made up of myeloma nursing experts from major centers where myeloma is treated.

IMF NURSE LEADERSHIP BOARD ADAPTS IN FISCAL YEAR 2020

The IMF Nurse Leadership Board® (NLB) consists of nurse experts from leading medical centers caring for myeloma patients who collaborate to improve the lives of myeloma patients. Due to the pandemic, the NLB reimagined many programs in 2020, adapting in-person events to virtual programming. The NLB’s 2020 Oncology Nursing Society (ONS) Satellite Symposium, “New Strategies for Multiple Myeloma Care: Case Studies for Nurses,” was led by co-chairs Beth Faiman, PhD, RN, MSN, APRN-BC, AOCN, FAAN (Cleveland Clinic — Taussig Cancer Institute) and Joseph Tariman, PhD, RN, ANP-BC, FAAN (DePaul University — Chicago) as well as faculty members Amy Pierre, RN, MSN, ANP-BC (Memorial Sloan Kettering Cancer Center — Montvale, NJ) and Tiffany Richards, PhD, ANP-BC (MD Anderson Cancer Center — Houston). They used real-life patient case scenarios on symptom management, infection control, and nursing implications. The newest treatments were addressed, meeting a critical need for nurses during this difficult time. The symposium was highlighted as part of ONS Bridge and offered 1.5 CE through August 2021.

This fiscal year, NLB members served as faculty at IMF education forums, including 2 Patient & Family Webinars, 5 IMF Regional Community Workshops, and 17 virtual support group presentations, reaching 7,000 attendees. The NLB faculty participated at the Support Group Leaders Summit, attended ASH with the Support Group Leaders, and conducted numerous roundtables with patients and professionals with the objective of improving care and quality of life for myeloma patients.

A “Living Well with Myeloma” webinar on “Multiple Myeloma Patient Safety and the Coronavirus,” was co-led by Dr. Beth Faiman in April. Beth Faiman, PhD, RN, MSN, APRN- BC, AOCN, FAAN (Cleveland Clinic — Taussig Cancer Institute); Kim Noonan, RN, ANP, AOCN, DNP (DanaFarber Cancer Institute — Boston); and Charise Gleason MSN, NP-BC, AOCNP (Winship Cancer Institute, Emory University — Atlanta) were contributing authors on a consensus paper on selinexor treatment along with IMWG members, while Amy Pierre RN, MSN, ANP-BC, published “African American Patients with Myeloma” in collaboration with IMF support group leader Tiffany Williams in the Clinical Journal of Oncology Nursing.

Finally, travel restrictions could not deter the important work of the NLB. At their sixteenth annual meeting, held virtually in September, the NLB celebrated the upcoming launch of Myeloma University, an education program that delivers nurse education on myeloma in simple and concise modules via an app. The group created tip sheets for patients on topics including telehealth and infection control, developed educational case studies, and updated their patient education decks, unveiling their new “Galactic Journey”-themed deck at the 2020 October Regional Community Workshop.

THE IMF AND MYELOMA COMMUNITY SHINE AS RESILIENT MYELOMA WARRIORS IN 2020

Despite a pandemic, the International Myeloma Foundation and the myeloma community thrived in 2020. We continued to connect in online settings, from patients supporting patients, to leading myeloma experts sharing knowledge, to caregivers and advocates virtually meeting, and more. Here are some of the ways you made 2020 a success:

The Regional Community Workshops (RCW) team quickly transitioned their in-person gatherings to region-specific webinars. IMF’s Senior Director of Regional Community Workshops, Kelly Cox, looked back upon these Herculean efforts and said, “VIRTUAL, VIRTUAL, VIRTUAL: ZOOM, ZOOM, ZOOM!!! These calls are essential for the groups on an ongoing basis. Personally, I’ve learned so much about people that I did not know. I found that connecting virtually was a great way to understand the IMF’s role in reaching out to patients where they are at.”

Not only did the RCWs continue to convene virtually, Patient & Family Seminars became Webinars. Also, the IMF’s signature “Living Well with Myeloma” webinars garnered larger audiences than ever before. In the U.S. alone, the reach of these two types of programming connected with more than 30,000 viewers online. Also, in Europe, more than 3,500 people met virtually in Patient & Family Webinars focused on different regions of the continent.

At a very local level, support groups thrived. As IMF Vice President of Support Groups, Robin Tuohy, said, “The IMF recommended that March meetings be cancelled. By April, we had a plan in place to sustain support groups virtually and secured GoToMeeting licenses for all leaders to use to conduct their meetings in a virtual setting. This enabled members to stay safe by being physically distanced, but to remain socially engaged and informed. The connections made and the information shared was key to patient and caregiver resilience, empowerment, and hope.”

The Sante Fe Land of Enchantment Myeloma Support Group met online. Through perseverance, the IMF Support Group team presented at more than 500 virtual local group meetings during the last fiscal year — that’s at a rapid pace of more than one virtual support group visit per day! They also conducted an all-virtual Summit, bringing together more than 100 support group leaders.

Also in 2021, the IMF launched the following page: https://www. myeloma.org/covid19-myeloma-patients on our website. As Dr. Durie said, “Myeloma patients have compromised immune systems and are highly vulnerable to new infections.” For this reason, Dr. Durie and team created up-to-the-minute blogs, FAQs, and videos for myeloma patients to stay safe, all housed at the link above.

Always quick to respond, the IMF InfoLine’s team kept abreast of the latest news about the treatment and management of myeloma as well as COVID-19 concerns. Of note, the team received record-high call and email volumes this past fiscal year. They continued to stick to their signature service: providing the best information about multiple myeloma in a caring and compassionate manner.

Finally, IMF researchers, healthcare professionals, and global advocates continued to collaborate online and maintain their work to find a cure. Some examples include:

The 11th annual summit of the IMF’s International Myeloma Working Group (IMWG) met virtually, using an innovative platform that allowed 60 myeloma experts to participate and have two-, three-, and four-way conversations. (Learn more on page 8).

The IMF’s Nurse Leadership Board (NLB) held its 16th annual meeting online in September, breaking into workgroup sessions to focus on updating patient resources. (Learn more on page 12).

The IMF’s Global Myeloma Action Network (GMAN) held its annual summit, usually scheduled for June, online in September 2020. It was attended by nearly 40 advocates, representing myeloma organizations from 5 continents and 31 countries. (Learn more on page 11).

In short, amid a year of uncertainty, the IMF and the myeloma community came together as “One Myeloma Nation” in 2020, showing that we are truly resilient Myeloma Warriors.

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