The first patient-led crowdsourcing and crowdfunding initiative for multiple myeloma research has exceeded its goal of raising over $500,000 to advance incredibly effective treatments for high-risk blood cancer patients.
The Myeloma Crowd Research Initiative (MCRI) is a new approach to identify and fund cancer research; combining the skill and knowledge of leading myeloma specialists with the patient perspective and supportive patient social communities to select and fund promising research projects in myeloma.
Dr. Ola Landgren of Memorial Kettering Cancer Center said, "MCRI has rapidly established itself as a funding source for cutting edge myeloma research. Patients and experts working together. Impressive!"
The target of the crowdsourcing and crowdfunding initiative was potential cures for high-risk myeloma. The MCRI invited myeloma researchers to submit funding applications and the initiative received 36 proposals from investigators at top institutions around the world.
"Determination, dedication and countless hours of planning and implementing fundraising has turned the MCRI's dream of funding a potential treatment for high-risk multiple myeloma into a reality. Immunotherapy was in its infancy when MCRI first selected two award-winning letters of intent. Now it is the much desired area of clinical research," said Cynthia Chimelewski, myeloma patient advocate.
Expert researchers and patient advocates led the MCRI Advisory Board selection committees. The founding members of the MCRI Scientific Advisory Board include: Robert Orlowski, MD, PhD, (MD Anderson Cancer Center), Ola Landgren, MD, PhD (Memorial Sloan Kettering Cancer Center), Guido Tricot, MD, PhD (University of Iowa), Irene Ghobrial, MD, PhD (Dana Farber Cancer Institute), Rafael Fonseca, MD (Mayo Clinic Scottsdale), Noopur Raje, MD, PhD (Massachusetts General Cancer Center) and Mike Thompson, MD (Aurora Health Care). The MCRI Patient Advisory Board includes Cynthia Chmielewski (@myelomateacher) Eric Hansen, Jack Aiello, and Jim Omel (well-known myeloma patient advocates) and Jenny Ahlstrom, founder of the Myeloma Crowd www.myelomacrowd.org)
The proposals were reviewed by the Scientific Advisory Board and narrowed to a top 10. Each of the 10 investigators were hosted on Myeloma Crowd Radio to share their work with the patient community and answer patient questions. Both the Scientific and Patient Advisory Boards then selected two projects to fund.
The final projects included CAR T cell research targeting CS1 and BCMA by Michael Hudecek, MD and Hermann Einsele, MD of the University of Würzburg, Germany and T cell research with autologous transplant by Ivan Borrello, MD at Johns Hopkins University. "This was accomplished years before immunotherapy treatments like CAR T cell therapy was elevated to its current position as the newest and best, last-chance therapy for heavily pre-treated and end-stage patients. It is no longer a matter of if but rather when we will have a cure for myeloma," said Gary Peterson, patient advisory board member.
The expert-patient collaboration was a success in finding the most promising research for high-risk patients. "We are delighted that our process identified the most cutting-edge research years before it became popular," said Jenny Ahlstrom, Myeloma Crowd founder.
Myeloma patient Eric Hansen said "The MCRI introduced many of us to the model of crowdfunding specific projects to advance the science in the fight against myeloma. Patients and their friends and families embraced this effort because every dime contributed was sent directly into the labs-- not into staff salaries, advertising, or administrative costs. Who else does that? It has been a great experience participating in what promises to be life-changing for many of us."