Since I complained about the metastatic breast cancer community being in ways "ignored" in my last post, I felt it was important to praise a new group that was announced yesterday. The Metastatic Breast Cancer Alliance, http://www.mbcalliance.org, was just formed. "The Metastatic Breast Cancer Alliance aims to unify the efforts of its members and to increase awareness and education while advancing research and policy – efforts for metastatic breast cancer that have the potential to extend life, enhance quality of life and ultimately find a cure (http://www.mbcalliance.org/docs/MBCA_Press_Release_10_10_2013.pdf).
Details are not prevalent on the site, yet, but they do have an initial goal of conducting a " Landmark Analysis to assess gaps, duplication and
opportunities in the field to gain consensus on a path forward to addressing the unique needs of those living with metastatic breast cancer"(http://www.mbcalliance.org/docs/MBCA_Press_Release_10_10_2013.pdf) with a projected release date for the information in early 2014. Here is the video that they released which I thought was extremely well done: http://www.youtube.com/watch?v=NyTAf3niEO0&feature=youtu.be.
It is just nice to know that the voices of many with MBC have been heard, and this is a wonderful starting place. It was interesting though to see the responses that have been posted on some of the web pages or facebook links to the information. The Komen foundation has been criticized by some people for not doing enough for MBC, the type that Susan G. Komen passed away from. Their facebook page announced their participation in the alliance by giving some of the real stats about the percent of early stagers that will become metastatic. The response by many was that the post had ruined their day and was insensitive; they didn't need to read that. This was such a classic example of what occurs in so many ways for those with mets, and it just emphasized to me how much this type of group is needed. Of course, no one wants to hear those facts, but having lived being completely blindsided by it, education of that possibility is needed. So, thank you to the Susan G. Komen Foundation, Metastatic Breast Cancer Network, Avon Foundation for Women, Breastcancer.org, Living Beyond Breast Cancer, and the other 10 organizations for taking on the challenge so that "together we are stronger than the disease."