“Open collaboration is critical for driving innovation…” – Open Source Quote
This video hit the MM community as I was traveling for a long awaited cruise celebrating 30 years of marriage with my husband Dave, who has MM. It has taken me awhile to finally get it up here for those of you that might have missed all the hullabaloo. But if you want to see the follow up on this, there is no place better than the illustrious, long time smoldering myeloma patient who lives in Italy, drum roll… Margaret (of course!). Read here!
But first, watch this. What struck me as THE MOST IMPORTANT feature in this, is not whether years from now it will pan out for us or not, but the paradigm shift of a researcher opting to do it as Open Source. THIS IS HUGE! If we can get more of our researchers opting to do this we might make progress much faster. MMRF founder, Kathy Guitsi, was instrumental in the formation of her work to demand sharing of tissue from ALL participating and making it impossible for them to say no. Slowly, people are making a difference and breaking down the old barriers that kept progress slow and arduous. Keeping everyone’s eye on the ultimate prize, which is the answer to the puzzle, and the saving of lives.
Just click on the Ted Talk photo in the event you don’t see a play button. It’s there.
I think… I’m just about caught up now on important posts. Thank you for your gracious patience as I was off galavanting doing other things and preparing for the holidays!
Wow Terry, I didn’t know that bit of information. Very cool. Yes, it was going around the MM community like wildfire in October.
For more on what Terry is talking about read it at Margaret’s Blog: http://margaret.healthblogs.org/2011/12/21/hear-hear-all-you-smoldering-hot-folks-a-peptide-cocktail-elicits-immune-response-to-multiple-myeloma/
I have previously seen this and the cool thing too is that Dr. Bradner is an actual myeloma expert who has a regular patient case load at Dana Farber. Hopefully, human clinical trials will be forthcoming soon. I am concurrently being monitored at both the NIH and UPenn for high risk smoldering myeloma and I also understand that Dana Farber will be launching human clinical trials with a cocktail of four peptides to try to prevent smoldering myeloma from progressing to active myeloma. It gives me a lot of hope to know that there are so many different approaches being tried to combat myeloma. Thanks for your blog. I really enjoy it. Terry dx. 8/11 age 49, light chain only kappa