Myeloma Patient Advocates In Action. Advocating For You!

A roundtable discussion of patients with multiple myeloma was held in Boston on July 14, 2015, with the goal of gaining insights into the challenges and gaps that patients and their loved ones are facing. This article summarizes the views of the patients regarding their experiences with current treatments and other issues related to cancer care. The participating patients were Jack Aiello, Cheryl Boyce, Yelak Biru, Cynthia Chmielewski, and Gary Petersen. They have all had multiple myeloma for many years and have expressed their perspectives based on their individual struggles with the disease. In addition, as leaders of their communities of patients with multiple myeloma, they have gained insights into critical issues that patients with multiple myeloma face from diagnosis and throughout their survivorship.  You can read the article if you CLICK HERE!

The Myeloma Crowd Research Initiative

The MCRI was started by Jennifer Ahlstrom, a myeloma patient and advocate, just as the IMF and the MMRF were started by a patient advocate.  The premise for this proposal is that high-risk myeloma is undeserved and most myeloma in the end stage is by definition high-risk.  It is felt that if you can find the cure for high-risk myeloma you have found the cure for all myeloma.  Unfortunately, the most likely cure for myeloma will be through the use of your own immune system to fight and kill the cancer cells.  This is not a drug but a process, and as a result may not have the resources devoted to it like a drug would, therefore alternate forms of financing are required.  As part of this program, patient advocates  Jenny Ahlstrom, Lizzy Smith, Pat Killingsworth, Cynthia Chmielewski, Jack Aiello, Jim Omel and Gary Petersen are members of the MCRI Patient Advisory Board.  You can find out more about this outstanding initiative if you CLICK HERE.