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 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 August 15th, this Saturday, we will 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.
Good luck and God Bless your Myeloma Journey/ firstname.lastname@example.org
For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1