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    • Myeloma Crowd Newsroom
    • Myeloma Crowd Research Initiative
    • Mar 31, 2015

    Press Release: Myeloma Crowd Research Initiative Selects 10 High-Risk Multiple Myeloma Proposals For Further Review

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Second Milestone Achieved For Patient-Driven, Crowdsourced Funding Initiative

SALT LAKE CITY, March 31, 2015 /PRNewswire-USNewswire/ — The Myeloma Crowd Research Initiative (MCRI) completed its second milestone with the selection of ten proposals that will now be evaluated for further review. The MCRI is the first patient-led, scientifically validated funding initiative uncovering solutions for high-risk multiple myeloma patients.

Stage 2 of the MCRI included preliminary vetting by the Scientific Advisory Board. “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!” said Dr. Ola Landgren, MD, PhD, and Scientific Advisory Board Member. Additional board member Dr. Noopur Raje, MD, PhD said, “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.”

In Stage 3 of the MCRI, 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/). Myeloma patient Jenny Ahlstrom began the show in 2013 with the goal to help patients understand the latest in research and encourage clinical trial participation. 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.

In the final stage, both the Scientific Advisory Board and Patient Advisory Board will join together to select the final number of projects to fund.

High-risk myeloma patients are anxious to find solutions after exhausting the now growing number of multiple myeloma therapies. As myeloma progresses, it becomes more aggressive, many times acquiring new high-risk features as it matures. Pat Killingsworth, myeloma patient and Patient Advisory Board member noted, “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.”  For patients like Pat who start their journey with low-risk myeloma but become refractory to existing therapies over time, and for those whose myeloma advances quickly and aggressively from the beginning, a cure can’t come soon enough.

About Myeloma Crowd/CrowdCare Foundation
The Myeloma Crowd is a division of the CrowdCare Foundation, a patient-driven 501(c)3 non-profit organization. We believe that patients can be part of the solution to find a cure for their rare diseases by supporting the research community. The Myeloma Crowd provides patient education, advocacy and now research funding for multiple myeloma. www.myelomacrowd.org

About 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.

One Comment

  1. Dolores Pederson April 21, 2017 at 12:53 pm

    So far I have seen nothing on here about Amyloidosis which sometimes can go along with Myeloma. I know it does not happen very often, but my husband had both so it can happen. I feel that the patients with Myeloma should be aware of the Amyloidosis and get some information from their doctor…that is if the doctor is aware of it. My husband’s hematologist/oncologist just said it was a cousin of Myeloma when we asked him. When my husband was still having other problems such as in his colon, heart, etc., he went to Mayo and the Amyloidosis was discovered in his colon and his heart. They also did the fatty aspiration and that also came back positive for the Amyloidosis. Brochures were even in the lobby of our hotel room showing the two can go together so am surprised that sites like these are not making people more aware of the two going together. My father in law also had Amyloidosis many years ago and his was in his kidneys. At the time the Myeloma was not mentioned so I do not know if he was tested for that.
    Since I have been posting quite a bit about this, I did get a post that said that the patients with Myeloma should ask their doctors about it, but most people do not know about it or have even heard about Amyloidosis so I feel it is should be up to the doctor to mention it to their patient. I realize that most of the Myeloma patients will not have the Amyloidosis also, but I feel that they should at least be told about it and have the test to make sure. I do know what we thought of my husband’s oncologist after he didn’t go further when we asked him about it. Number one jerk!
    Heard from another person that her doctor was embarrassed after the Amyloidosis was found in her colon and then in her heart. Guess he hadn’t thought about it either. If the doctor knows about it and that is a big “if” and does not say anything to the patient…that is wrong. They should be informed!

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