Goal of Myeloma Action Month? Telling the community’s stories.

International event aims to help raise awareness of myeloma

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by Mary Chapman |

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For this Myeloma Action Month (MAM), observed each March to call attention to multiple myeloma and those affected by the blood disorder, the International Myeloma Foundation (IMF) is focusing on telling the myeloma community’s stories.

The global event is aimed at heightening awareness of myeloma, which accounts for 10% of all blood cancers, among the general public, lawmakers, public authorities, researchers, industry representatives, and health professionals. Supporters are encouraged to act this month to positively affect the community.

This year’s IMF event features the organization’s new #MYelomaSTORY campaign, which involves sharing narratives about living well with myeloma and prompting others to do so. Stories featuring the hashtag will be displayed on the MAM’s “Wall of Stories” webpage.

“As a young immigrant from Ethiopia, a new husband, and graduate student, I learned I had multiple myeloma at the age of 26,” Yelak Biru, IMF’s president and CEO and a 27-year myeloma survivor, said in a foundation press release. “While the road of living with myeloma has not always been smooth, it has been paved with many valuable lessons along the way. One of those lessons is that we must learn to live with, and not for, myeloma. This Myeloma Action Month, I ask you — as patients, care partners, and anyone who has been touched by this incurable disease — to share how you live well and not for myeloma.”

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In another way to share stories, supporters are asked to photograph their chosen action, add a caption, and post it on social media using the #MYelomaSTORY hashtag.

During March, the IMF will share infographics containing statistics and facts on social media based on story submissions by myeloma patients and care partners. Supporters are encouraged to follow along daily on Facebook.

The IMF also is offering a video mashup featuring international members of the myeloma community describing their myeloma story in one word, and a toolkit of facts, statistics, and other graphics for social media.

In addition, a patient action letter by Brian G.M. Durie, MD, IMF’s chief science officer, may be personalized and shared with general practitioners and internists to increase awareness. There also are guest blogs from patients and their care partners that supporters can check out.

In addition, patients and caregivers are invited to join a virtual support group or start one by sending an email to Robin Tuohy, IMF’s vice president of support groups. Event supporters may also increase awareness by using this press release to craft a public service announcement for local media, or by donating to the foundation.

The IMF is offering the following free in-person MAM events:

IMF Facebook Live events include:

  • 7 p.m. EST March 7, Beth Faiman, PhD, IMF’s nurse leadership board member, will discuss her myeloma story and living well with myeloma.
  • 7 p.m. EST March 22, a question-and-answer session featuring Joseph Mikhael, MD, IMF’s chief medical officer.

The organization also is offering a 31-day wellness challenge for support group members during March to promote healthful living among patients while increasing myeloma awareness.