By Gary Petersen | Posted - Aug 20th, 2015

 

 

 

 

Can Myeloma Patients Save Themselves? Could Social Media Help?

BY GARY PETERSEN

For years many myeloma specialists concluded multiple myeloma was incurable.  But now many specialists believe 10 to 15% of patients have been cured, and those not cured  will live for 8 years or more if they do not have  high-risk disease. For the 15% who are high risk at diagnosis and the 70 to 75 percent of low-risk patients whose myeloma will eventually morph into high risk disease, this is just NOT GOOD ENOUGH.  So the key to LONG TERM survival is the cure of high-risk myeloma.

How can we make advancements in high risk disease when funding for myeloma research is less than half of that for all other cancers and just 20% of that for melanoma ( often confused for myeloma)?  The MMRF does a great job of trying to obtain funding from those philanthropists who have been so generous with their giving.  But even with this effort we are still far short of the average funding.   I like to think that if we expect something to change, something must change.  The corollary to this is, "The definition of insanity is doing the same thing over and over again and expecting  different results."   So WHAT CAN WE DO? The we being the myeloma patient community and our army of caregivers, friends, and family.   There is a new initiative called the Myeloma Crowd Research Initiative or MCRI.  So what is this and why might this be different?

It is different in that it is a patient and myeloma specialist driven initiative with the belief that if mobilized, the myeloma patient community, with the most to gain or lose, can help fund the most promising high risk disease proposals for a cure.  A recent  blog post on the Myeloma Crowd web site provided the following project update.

The Myeloma Crowd Research Initiative (MCRI) is the first crowdsourced and patient-funded effort to find effective solutions for multiple myeloma patients with high-risk disease. As patients, we believe that we can make a difference in the pace of research and we are willing to pitch in and do whatever is required to do just that. Our goal is simple – help find and fund a cure for multiple myeloma.

The new arsenal for most myeloma patients is impressive, but for patients with high-risk genetic features or aggressive relapsed/refractory myeloma, the outcomes are still alarming. We asked researchers all over the world to submit their research proposals for high-risk myeloma, and we received 36 high-quality responses. From that list, we asked our Scientific Advisory Board to help narrow the list to 10. Those 10 were invited to participate on Myeloma Crowd Radio in order for patients to understand what the proposals aimed to accomplish. What we found was that most of the 10 research proposals were equally exciting for low or standard risk myeloma patients. Two of the proposals were able to receive funding through other sources, so 8 of the 10 submitted full proposals for review.

On  Monday August 17th,  they announce the proposals selected for the patient-driven funding initiative. We will be including these proposals on our MCRI fundraising page and we invite you to help make their research a reality by creating your personal fundraising page for this campaign. You can upload your own photo, change the text and send a link to your friends and family, asking them to support you by funding research that has been carefully selected by leading myeloma specialists and educated myeloma patients. The research from all of the proposals is impressive and selecting just a few from the list below is incredibly challenging. To view all of these exceptional proposals CLICK HERE.

The two proposals which were accepted for funding  are the following:

CAR T Cells Targeting CS1 and BCMA by Dr. Hermann Einsele, MD and Dr. Michael Hudecek, MD of the University of Würzburg, Germany

Immunotherapy using MILs and autologous transplant by Dr. Ivan Borrello, MD

For more information on these two proposals CLICK HERE.


 

A key component of this initiative is the use of crowd funding.  Crowd funding is the use of the internet and social media to fund these exceptional projects, without which they will remain just great ideas with no funding to bring them to fruition. If you would like to know more about how social media can help to change the way we achieve new successes in myeloma research and treatments, Dr. Mike Thompson will provided an overview on Monday, August 17th.  To listen to a rebroadcast of this program CLICK HERE.Good luck and God Bless your Myeloma Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

 
Gary Petersen
About the Author

Gary Petersen - Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1

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