The Multiple Myeloma Community has always had a unique synergistic combination of myeloma specialists, researchers, patient advocates, myeloma institutions(IMF, MMRF, MCRI, LLS and MMORE), and pharmaceutical companies. Now more than ever patient and patient advocates have been asked to contribute their ideas, concerns, and recommendations to improve the myeloma patient experience and outcomes. I, Gary Petersen, the editor of myelomasurvival.com am honored to be considered part of this amazing group. Some of the most recent efforts follow.
CONQUER The Patient Voice
Article - Opportunities For Improving The Care Of Patients With Multiple Myeloma
Jack Aiello, Cheryl Boyce, Yelak Biru, Cynthia Chmielewski, and Gary Petersen
CONQUER The Patient Voice
Article - Opportunities For Improving The Care Of Patients With Multiple Myeloma
Jack Aiello, Cheryl Boyce, Yelak Biru, Cynthia Chmielewski, and Gary Petersen
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 high risk myeloma is undeserved and most myeloma in the end stage is by definition high risk. It is felt 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, and Gary Petersen are members of the MCRI Patient Advisory Board. You can find out more about this outstanding initiative if you CLICK HERE.
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 high risk myeloma is undeserved and most myeloma in the end stage is by definition high risk. It is felt 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, and Gary Petersen are members of the MCRI Patient Advisory Board. You can find out more about this outstanding initiative if you CLICK HERE.
Myeloma Crowd TV
The first episode of Myeloma Crowd TV was broadcasting with Jenny Ahlstrom anchor. The first episode centers on the great news which was presented at this years ASH (American Society of Hematology) which was just this last December. Jenny puts it in a very patient friendly form. View the first episode below.
I have often said the two most important elements of a successful myeloma prognosis is to have a myeloma specialist on your team and to become your own best advocate. Recently, I was interviewed by Andrew Schorr of Patient Power and he gave me the opportunity to explain how very important it is to have a myeloma specialist on your treatment team. With the speed of new drug development and approval, and the breakneck pace of new treatment approaches, a specialist has become an absolute necessity. A listing of over 200 specialists can be found if you CLICK HERE. You can view the interview below.
Over two years ago prior to the resent flood of new myeloma drugs and treatments, Dr. Noopur Raje, a world renowned myeloma specialist and the Director of the Center For Multiple Myeloma at the Massachusetts General Hospital provided a similar plea "Why Should Myeloma Patients Visit A Specialty Center?" You can view this call to have a myeloma specialist on your team if you CLICK HERE.
On the second point of being your own best advocate Cynthia Chmielewski recently gave an excellent summary of the reasons and importance of being your own best advocate in a MCRI video and you can view it below.
On the second point of being your own best advocate Cynthia Chmielewski recently gave an excellent summary of the reasons and importance of being your own best advocate in a MCRI video and you can view it below.
And heartfelt thank you to all of the myeloma advocates and all they do for the myeloma patient community. You know who you are. You are the Jim's, Lori's, Nick's, Matt's, Kimberly's, Dana's, and Danny's of the world.
For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
RSS Feed