The first patient-led crowdsourcing and crowdfunding initiative for multiple myeloma (MM) research has exceeded its goal of raising $500,000 to advance new treatments for high-risk blood cancer patients.
The Myeloma Crowd Research Initiative (MCRI) represents a new approach to identify and fund cancer research, by combining the skills and experience of myeloma specialists with the patient perspective and community support.
The MCRI is led by Myeloma Crowd, a division of the CrowdCare Foundation, which is a patient-driven, nonprofit organization. Myeloma Crowd provides education, advocacy work, and research funding for MM.
The first two projects selected for funding are:
- CAR T-cell therapy targeting CS1 and BCMA, led by Dr. Hermann Einsele and Dr. Michael Hudecek, both from the University of Würzburg, Germany
- T-cell therapy with autologous transplant, led by Dr. Ivan Borrello from Johns Hopkins Sidney Kimmell Comprehensive Cancer Center
“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,” Cynthia Chimelewski, myeloma patient advocate, said in a press release.
“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 goal of the crowdfunding campaign was to fund projects that explored potential cures for high-risk myeloma. The MCRI received a total of 36 research proposals from investigators worldwide and eventually narrowed the list to a top 10.
Each of these 10 investigators was a guest at Myeloma Crowd’s online radio show, hosted by the founder of CrowdCare Foundation and Myeloma Crowd, Jennifer Ahlstrom. In these radio interviews, Ahlstrom— herself a multiple myeloma patient — invites top myeloma specialists worldwide to educate patients on different topics and promote clinical trial participation.
After the top 10 finalists shared their work and project proposals with the patient community on the show, the Scientific and Patient Advisory Boards selected the two winning projects to receive the crowdsourced funding.
“We are delighted that our process identified the most cutting-edge research years before it became popular,” said Ahlstrom, referring to the expert-patient collaboration initiative’s success in finding the most promising research for high-risk patients.
“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,” added Eric Hansen, myeloma patient.
Recently, the organization has also launched an online TV channel, with four episodes available so far. At Myeloma Crowd, you can also find specialists near you and financial resources you can apply to, in case you need help with treatment costs.
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