BY GREG BROZEIT Spring is the season of planting in hope and anticipation of rewarding harvests. So it was fitting that the Myeloma Crowd Radio interviews with the ten finalists of the Myeloma Crowd Research Initiative (MCRI) took place in spring. To understand the potential these seeds hold, take some time to listen (and re-listen) to the archived interviews or read (and re-read) the transcripts on The Myeloma Crowd website. What you will find is an unprecedented set of in-depth conversations led by myeloma patients for the benefit of myeloma patients. The MCRI interviews are about more than current drugs, therapies or clinical trials. They look beyond the horizon to figure out which paths should be chosen to reach unknown, hopeful destinations. Mostly, they are reports to you, the myeloma community, as potential shareholders in a unique, growing endeavor. A perusal of the MCRI finalists indicates the legitimacy of the competition: established researchers and clinicians known to most veterans of the myeloma community; a strong selection of the brightest young minds who will lead the next generation; and new players who are forging paths never taken before. These include:
The soil is almost ready for the next growing phase. Now is the time to select the right seeds, although right might not be the best term. As the eleven-plus hours of interviews and the transcripts prove, all the seeds are full of promise. The tragedy is that we dont yet have fields big enough to sow them all at least not yet. The MCRIs ultimate goal is not mirror the current process of research activity largely guided by large academic research groups or the National Institutes of Health. It is about creating support for complex research based on relatively newly available genomic information. It is also about reporting directly to patients and actively asking for their input and opinions at every stage of the process. It will address meaningful topics like quality of life in trials, access to healthcare for those not in major centers, and supportive services. Patients are interested in personalized treatments, in understanding the immediate relevance of discoveries and potential therapies, and knowing if and when they will be made available. The MCRI process is about creating consumer-driven models for future research. As shareholders in this venture, YOU must be able to make informed decisions to invest in ideas YOU want to see developed. Myeloma Crowd Radio interviews are conducted at a level that YOU can understand. The Myeloma Crowd will be reporting back to patients through patient forums, not just at professional meetings like ASH. YOU will be included in the experience with the hope that the relationships that will develop and be sustained will create new measures of accountability. One commentator on the MCRI interviews wrote, I think Jennys interviews are delivering an almost unbelievable service to MM patients. I couldnt agree more, but YOU are needed to make it more than a service. I wrote in previous posts about how myeloma patients have established a tradition of be active agents of change, challenges to funding research, the innovative approach of The Myeloma Crowd, and how research in rare disease trickles up to benefit larger disease populations. Taken together with the discussion in this post, I believe all add up to compelling reasons why The Myeloma Crowd and MCRI will become legitimate contributions to not just the myeloma community, but to cancer patients everywhere. YOU, your friends, families, and communities are essential to nourish the crowdfunding seeds being planted by MCRI. The questions are: how many seeds can WE plant together and how can we make their bounty multiply? The eventual harvest may make this a spring to remember. To learn more about the MCRI click here. To create a fundraising page, click here.
about the author
Greg Brozeit has been engaged in myeloma patient advocacy since 1998. He began working with the Myeloma Crowd in 2015. Prior to that, he consulted with Dr. Bart Barlogie at the University of Arkansas after working with the International Myeloma Foundation for 15 years, where he inaugurated the public policy advocacy program, patient support group outreach and IMF Europe, organizing more than 100 physician and patient education programs. He earned his BA in political science from Loyola University in New Orleans and lives in northeast Ohio.