Hoping to involve patients and their families and the myeloma community at large, this year’s activities will focus on so-called Myeloma Warriors — patients, caregivers, friends or healthcare providers who see themselves as part of a larger disease community.
IMF is encouraging using social media with the hashtag #MyelomaWarrior. Such posts will stream to the IMF’s “Wall of Warriors” at the Myeloma Action Month website, which also includes shareable graphics. The site also offers Myeloma Warrior-branded apparel and other items the foundation hopes will be used in “selfies” and posted on social media channels.
“The IMF is proud that we have brought together doctors and researchers from around the world to work and collaborate together to find a cure,” Susie Durie, IMF president and chief executive officer, said in a press release. “We’re grateful that IMF is able to fund these research projects, thanks to our many donors, and to date we have 40-plus research projects around the world.”
Those projects, she said, include iStopMM in Iceland, reportedly the first large-scale screening study aimed at preventing myeloma before it develops.
It also includes the ASCENT Phase 2 trial (NCT03289299), a Black Swan research initiative currently enrolling high-risk patients who have a precancerous condition known as smoldering multiple myeloma at a number of U.S. sites. The trial will treat patients with intense therapy combination — Darzalex (daratumumab), Kyprolis (carfilzomib), Revlimid (lenalidomide), and dexamethasone — for two years.
In addition to using the #MyelomaWarrior hashtag, the IMF is asking individual participants to change social media images to a MAM logo, share infographics and badges on social media, contribute a public service announcement to an area radio station, share personal stories with the IMF, use Facebook Birthday Fundraising to raise funds for IMF, support the IMF by taking advantage of Takeda Oncology’s Music 2 Fight Myeloma campaign, and write an article about multiple myeloma for a local newspaper.
Other support opportunities include attending the IMF Patient & Family Seminar in Boca Raton, Florida, March 15–16, and the free IMF Regional Community Workshop in La Jolla, California, on March 23. Those interested in starting a local support group may contact Robin Tuohy, the IMF’s senior director of support groups, at 203-206-3536.
For more information about how to get involved, visit here.
In 2009, the foundation was the first to declare March as Myeloma Awareness Month. To encourage a more forward approach, the IMF changed the campaign in 2016 to Myeloma Action Month.
With more than 525,000 members in 140 countries, the IMF is the largest foundation to focus specifically on multiple myeloma, a cancer of the bone marrow plasma cells that the American Cancer Society said affects 1 in every 132 U.S. residents.