Sep 17, 2017 12:30PM
I do hope that BCO will read and consider well the constructive suggestions on this thread, even though there is a lot of understandable venting and a few off-topic posts here too.
When I was first diagnosed, BCO was a good source of information to get me oriented. I spent a lot of time reading on the main site. When my mets diagnosis came, BCO became a necessary lifeline of communication with others dealing with breast cancer. These things are worth keeping, and of course some funds are needed to do this. I looked at the Fright web site, and can see that the "Get the Facts" link has some good content. However, the Halloween party theme is totally inappropriate and may damage BCO's reputation. Obtaining the needed funds in the wrong way will not ultimately support the goals and success of BCO.
I understand that these ill-conceived events are not likely to be called off at this point. But perhaps they can be tweaked to be more respectful. BCO, imagine your mission is to serve another group such as war veterans. War is frightening. War is hell. Soldiers return wounded in body and spirit. A fund raising evening for support services for them would be a classy affair that didn't make light of the experience. Rather, you would praise the soldiers for their bravery and speak of their courage. You would talk about how their lives have or can be improved by certain services. Solidarity and embracing life would be themes. You would not make light of their experience with cute slogans, all the trappings of a celebration, and connecting it with a children's holiday. Well, breast cancer is frightening. Breast cancer is hell. People are wounded in body and spirit. Show some respect.
The slogan "Take the fright out" is problematic because it is not possible or realistic to take the fright out. The very suggestion shows a lack of understanding and feels dismissive or insulting to those who have fears about breast cancer -- which must be 99.9% of women and a good number of men, too. True courage is being afraid but doing what you need to do anyway. That is where your theme and slogan need to come from. Just a slight shift would make a difference. Don't tell people not to be afraid. That makes it look like you don't know much about breast cancer at all. Instead, tell people to have courage in spite of their justifiable fear, and that they have information and support available.
I don't understand what will be so terribly expensive about revamping the web site. You need a couple people to curate journal articles and a couple to write content, a couple good programmers, and some moderators. I witnessed first-hand a proposal for expensive programming work where the needed programming was promptly done without fanfare by a single, smart volunteer programmer, while the organization was still busy meeting with the people in suits. I also witnessed a super-expensive, major-philanthropist-funded programming project that ultimately failed because it was out of touch with the end users.
The vagueness of the description of proposed BCO changes worries me. First, it makes me think the changes will be presented as a done deal when it is too late for constructive feedback. Second, the "more personalized experience" language raises privacy red flags.
The irony here is that this misguided Fright campaign erodes trust and respect for BCO, as does the caginess about the plans for the money raised. So members and their friends and families will be less likely to offer help and less likely to donate. And the general public also is tiring of the pink party business. People can tell sponsors such as Nordstrom what they think of their involvement in inappropriate campaigns. So please, BCO, take the constructive suggestions seriously and everyone will be better off.
2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD 1 1/2yrs. GI/perit mets
2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2-
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)