Cancer in general is so grossly underfunded, and myeloma gets just 10% of the funding per life lost as compared to melanoma. Melanoma is the cancer often confused with myeloma.. One in 5 myeloma patients die within the first two months of diagnosis because of delayed diagnosis, due in large part by a lack of awareness by the public and the general practitioners and local oncologists. So the two most important unmet needs, in my mind, are funding for research and awareness of the general public, the general practitioners, and oncologists who are not myeloma specialists.
Recently, I have seen a shift in the specialist community to finding myeloma early and treating it before it causes organ damage, and drug companies partnering with the patient community to help fund research and increase awareness thru social media. It appears Big Bad Pharma is not so bad after all. Historically they have supported local IMF groups and some web sites, but this is the first time they have come out of the shadows to try to make an awareness DIFFERENCE . The first such effort was the MCRI, Myeloma Crowd Research Initiative where Takeda contributed $5 for every tweet to the tune of $50000 for research. But maybe a more important factor is that they helped to get the word out on social media, therefore possibly helping awareness to go above the dismal current 3%. Everyone has heard of lymphoma and leukemia, but few people ever hear about myeloma until they are diagnosed.
A new initiative funded by Sanofi will contribute $5 for each tweet which includes the hash tag #IMambo4Myeloma. So far $30,000 has been collected. If you go to twitter and search #IMambo4Myeloma you will find hundreds of posts which you can retweet and make hundreds and thousands for cancer research at no cost to you. Please participate, it might just save lives, maybe yours. Dana Holmes was the key to setting up this program with ASH and Sanofi, and has provided the following update on the program.
Recently, I have seen a shift in the specialist community to finding myeloma early and treating it before it causes organ damage, and drug companies partnering with the patient community to help fund research and increase awareness thru social media. It appears Big Bad Pharma is not so bad after all. Historically they have supported local IMF groups and some web sites, but this is the first time they have come out of the shadows to try to make an awareness DIFFERENCE . The first such effort was the MCRI, Myeloma Crowd Research Initiative where Takeda contributed $5 for every tweet to the tune of $50000 for research. But maybe a more important factor is that they helped to get the word out on social media, therefore possibly helping awareness to go above the dismal current 3%. Everyone has heard of lymphoma and leukemia, but few people ever hear about myeloma until they are diagnosed.
A new initiative funded by Sanofi will contribute $5 for each tweet which includes the hash tag #IMambo4Myeloma. So far $30,000 has been collected. If you go to twitter and search #IMambo4Myeloma you will find hundreds of posts which you can retweet and make hundreds and thousands for cancer research at no cost to you. Please participate, it might just save lives, maybe yours. Dana Holmes was the key to setting up this program with ASH and Sanofi, and has provided the following update on the program.
Dana Holmes "A shout out to the members of our group who continue to actively participate in the #IMambo4Myeloma awareness and $$ for the American Society of Hematologists...THANK YOU for stepping up...this alternative to fundraising for research/educational $$ from a major pharmaceutical company (SanofiUS) to help the myeloma community continues to be one of the easiest fundraisers to actively engage in..the myeloma researchers need funding to conduct their research, and it is getting more difficult for them to access funds...this may not amount to much in the big scheme, but it certainly adds to the pot ...It is easier to raise $1,000 from tweeting or sharing posts than it is to sometimes rally your personal network of family and friends to donate to a particular cause...it can at least augment your personal efforts to raise $$ for a particular organization or the overall good for the myeloma patient community, which we are all unwilling members of.
Many of you created a Twitter account or reactivated your account just to join in.
Again, thank YOU for stepping up. Because of YOUR continued efforts, we have already raised $31,000...and we still have 10 more days to do some additional good and just as important, to raise AWARENESS !!"
Dana has been tireless in getting the participation of her smoldering support group, and I am hoping this post will help to improve participation even more among the myeloma patient community.
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
Many of you created a Twitter account or reactivated your account just to join in.
Again, thank YOU for stepping up. Because of YOUR continued efforts, we have already raised $31,000...and we still have 10 more days to do some additional good and just as important, to raise AWARENESS !!"
Dana has been tireless in getting the participation of her smoldering support group, and I am hoping this post will help to improve participation even more among the myeloma patient community.
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
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