by annegarrett (2525 Posts), Tue Oct 12, 2004 12:52 am
Totally right. You are free to write on your own to whomever you want about whatever you want. Thanks for reading between the lines.
Per the PF I am just saying that in order for the PF to move forward in a organized fashion we have to work together as a team and we have to have a plan. This forum topic is specifically set up by the PF to generate ideas about PF sponsored activities to raise awareness and fundraise and then to input those ideas into the master plan. It is not in the organization's best interests, its members, our volunteers, nor the patient community we serve to be all going our own way without working as a team. Some people are not as energetic and driven as our amazing Colorado team--so we would encourage them to participate in the PF organized letter writing that is based on a plan--developed by people who have 20+ years experience as public relations and communications professionals. We would be stupid to just disregard their experience, their understanding of the field and assume that they have not put together a plan. It is a waste of effort on everyone's part to recreate the wheel. I recognize that people feel like we are being controlling and there is some truth to that--we have worked very hard for five years to get to where we are--every decision has been one made by the group--and that group now has grown to include you all. We read these posts--we include them in our plan and we include all of you (via emails, phone calls, etc...) in the group. It is very much a grassroots organization. We are not remotely moving slowly--though I can appreciate that is sure seems that way because most of us would like a cure now. In the last four years--we have gone from having no presence at all on the website to getting close to 50,000 unique visitors a month to the website. We got an article in October's Pregnancy, November's Fit Pregnancy, and have been featured in Glamour, BabyTalk, epregnancy, CNN, Reuters, the New York Times Sunday magazine,BBC news, Toronto Herald Tribune, NPR, just to name a few. A google search for us reveals 173,000 hits for the term "preeclampsia" when just a year ago it was only 40,000. Clearly we are raising awareness and you all are a huge part of that. What I am saying is that sure--you can write anyone you want to on your own--but we would prefer that if you really want to maximize your impact--that you be part of the team and follow the guidance of our Communications team--who (as you can see from the impact we have had) really do know what they are doing.