SALT LAKE CITY: Jan. 30, 2015 — The Myeloma Crowd Research Initiative (MCRI) is calling for research proposals for high-risk multiple myeloma, a rare blood cancer from February 1-28, 2015 on the Myeloma Crowd website at www.myelomacrowd.org/mcri. The MCRI is a new way of fundraising for myeloma research, combining the skill and knowledge of leading myeloma specialists with educated “epatients” to together select and fund promising research projects in myeloma. This is the first time a united group of patient activists have helped steer the direction of myeloma research. The MCRI has selected high-risk myeloma including genetic features (del 17p13, 4;14, 14;16 and 14;20) and aggressive features in relapsed/refractory myeloma patients as its main area for research funding. While life expectancy has doubled in the past ten years with the introduction of new myeloma drugs, outcomes for patients with high-risk myeloma is still dismal. As myeloma progresses, it becomes more aggressive, many times acquiring new high-risk features as it matures. Multiple myeloma expert Dr. Rafael Fonseca, MD of the Mayo Clinic in Scottsdale, Arizona, said, “The study of high-risk myeloma should be one of the top priorities for myeloma researchers. New and radically different treatment approaches are needed.” Hitting the hardest cases of myeloma with new ideas is a bold, top-down approach that will provide a trickle-down effect to standard or low-risk patients that continue to live with this incurable cancer. “What we have learned is that treatments that work well in high-risk patients tend to work even better in standard-risk patients,” said Dr. Guido Tricot, MD, PhD, University of Iowa. Letters of Intent will be accepted on the www.myelomacrowd.org/mcri website from February 1-28, 2015. Proposals from selected applicants will be reviewed by both a Scientific Advisory Board and Patient Advisory Board who will select final projects for crowdfunding campaigns. Due to the nature and incidence of high-risk myeloma, collaborative proposals between facilities and investigators are welcome.
Pat Killingsworth (multiplemyelomablog.com), Gary Petersen (myelomasurvival.com), Jack Aiello (NCI steering committee member, well-known myeloma patient advocate), Jenny Ahlstrom (www.myelomacrowd.org, www.mpatient.org) and Cynthia Chmielewski (www.twitter.com/MyelomaTeacher). MCRI Communications Advisory Board: Dr. Mike Thompson, MD, PhD (ASCO Social Media Work Group, co-founder #mmsm Twitter group) and Myeloma Crowd patient advocate Lizzy Smith (www.lizzysmilez.blogspot.com). About Myeloma Crowd/CrowdCare Foundation The Myeloma Crowd is a division of the CrowdCare Foundation, a patient-driven 501(c)3 non-profit organization. The Myeloma Crowd provides patient education, advocacy and now research funding for multiple myeloma. Find us on www.myelomacrowd.org. Contact: Jenny Ahlstrom Myeloma Crowd 801.949.1034 firstname.lastname@example.org
about the author
Lizzy Smith was diagnosed with myeloma in 2012 at age 44. Within days, she left her job, ended her marriage, moved, and entered treatment. "To the extent I'm able, I want to prove that despite life's biggest challenges, it is possible to survive and come out stronger than ever," she says.