[chrisy]

I wouldn't say that the subject has been dropped...or that interest in the subject has been dropped. What has dropped is visibility and discussion of it on this thread.

What is pending is a strategy and organization to enable us to better make our voices heard, and work to be done in drafting sample letters and hopefully a position paper. I have been actively working on this with a few of the folks who had posted on this thread to get this started. If you would like to participate in this process, send me a pm.

Some have been taking individual steps, writing letters, trying to get interviews etc. I did take a vacation...but shlepped along about 4 pounds of articles, links and paper to draft letters on. (un)fortunately I didn't have access to keyboards or internet, so I had to spend much of my vacation....relaxing. Now I've been working 7 days a week to catch up but I'm not complaining because being able to have a full life is what it's all about.

I've talked, and learned behind the scenes about how to set up strategies to make our voices heard and researched where we can find allies. TDM1 is a hot issue; and each news report (such as several this week from the Milan meeting) is another opportunity to add our voices to the discussion.

Creating a sustained effective response is new territory for us as a group - we are primarily a support group, not an advocacy group. So we do need a strategy to do this - what we can do, what we should do - and most importantly, what activities have a place in Joe and Christine's home. I've asked Christine for permission to set up a room - even if it's the back porch - where those who are interested can work on these issue.

In my discussions with people who do this for a living...I've learned we are dealing with strong forces out there. Strong and sometimes difficult but not impossible to move.

The advice I've been given is that letters - both personal and as organizations - to the key FDA players and your local congresspeople and senators CAN have an impact. Factually supported letters are effective, but your personal perspective as a person living with Her2+ cancer is also impactful.

I had a long discussion with someone on my flight to Italy about TDM1 - and realized that although she considered herself a breast cancer advocate she had NO CLUE what Her2+ was, or what that meant, and certainly nothing about TDM1. I'm sure this applies to virtually all of our elected representatives (and possibly, I fear, some in the FDA!). Educate them at every opportunity.

I posted contact info for these people (FDA and how to contact your representatives) earlier in this thread. If you have meaningful input, send a letter now - don't wait. Then send one AFTER the election as well!

If you do not feel confident enough at this point to do so, one of the supportive projects we are working on is to draft some key talking points...but many of them are also already contained within this thread. Be courteous and respectful in your communications (this forum is a great model for that). It's hard to win someone over to your position by calling them names.

So, if you can do something on your own (write letters to newspapers, get an interview, deluge your elected representatives) now, DO IT! If you would like to participate in setting up a broader strategy to make our voices heard on this and other issues, send me a PM.

If you're not ready to do either of these things and need some guidance/support, hang tight. Oh, and if you've ALREADY told me you're in for the strategic part (you know who you are!), you know there's no backing out now and I'll see you on FB and in SA.