To view the press release, click here.
We are happy to announce the successful completion of Stage II of the Myeloma Crowd Research Initiative.
For Stage I, we reached out to myeloma researchers and specialists worldwide and asked them to submit their proposals specifically for high-risk myeloma. We received 36 high-quality proposals from the best and brightest in the field of myeloma. About the first stage, Dr. Noopur Raje, MD, PhD and Scientific Advisory Board member commented,
"I have been amazed at the enthusiastic high-quality responses and the quick turnaround time. This approach forges a way forward to reach a broader community and I look forward to participating in the review process."
"After careful review of a large number of innovative projects focusing on high-risk myeloma, we have now selected ten projects and invited the investigators to develop and submit their full proposals for review. This is a very exciting time for myeloma research!"
We are now in Stage 3 of the MCRI process. Each of the ten investigators will be invited to submit a complete proposal and participate on the popular Myeloma Crowd Radio show (https://www.myelomacrowd.org/myelomacrowd-radio/myeloma-crowd-radio-episodes/). The high-risk myeloma series will give patients and the community at large a chance to call in and ask pertinent questions about the projects. After the show, a full transcript is available for patients to review, share and "like" using social media.
This is the very fist time that myeloma patients together have taken the lead to help discover, crowdsource and fund new therapies in multiple myeloma. Why is a new approach needed? We believe the MCRI takes the best of both the patient and scientific perspectives and fills a gap in the funding now available for researchers. According to Dr. Craig Crews, inventor of carfilzomib,
"Funding for biomedical research in the US had decreased in the last 10 to 15 years to the point where for every 100 applications that are put in to the NIH, 90 of them are being rejected. Its clear that there are some that should be rejected but as you can imagine year after year after year, the bad ones the mediocre scientists they leave the field and were really cutting into bone now in terms of rejecting really good science."
Of course we all want a treatment that will cure myeloma, but for those who have exhausted the now growing number of multiple myeloma therapies, or whose myeloma is highly aggressive right from the beginning, the long sought-after cure is welcome sooner rather than later.
"I recently relapsed for the third time. As someone who's running out of options, I appreciate the MCRI's focus on supporting promising research that has the highest likelihood of helping patients like me right away."
We believe that the efforts to first focus on high-risk myeloma patients will benefit us all because we all become "high-risk" when our myeloma stops responding to available treatments.
Today is the day for patients to get involved to have a say in what gets funded and developed. We encourage you to listen to the shows as they are held, read the transcripts, "like" and share the ones you see as most interesting and help us join together to find a cure.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.