I did it. I called the local Cf chapter today. No one answered, so I rambled on the machine for a bit, realizing as I did that I really have no plan. But I did check out the CFF guidelines for starting an adviosry group (thanks Betsy) and with my germy, disorganized clinic, I think this is what I'd like to start with: simply an email chain where epople can share ideas, etc, escpcially in making our clinic better...and we can see what develops from there. This, I can do. Email and I are like two peas in a pod. I am not a good fundraiser and don't always have time to give manpower hours with the little ones, so I think I could actually do something like this. We'll see what they say. Wel, what can they say? No, you can't? ha. I mean come on. I just need access to email addresses I guess, so hopefully people will help somehow in getting the word out.
Also, I joined facebook, which is funny. I admit I do have a voyeurisitc myspace page under a completely false name and meail so that I can spy on people, but the facebook is real. I have been so anti these networking sites....but it is becoming an addiction, looking up folks. I just wish I could see their pages wihtout needing to friend them, because the 7th grade boyfriend doen't need to be on my friends list, now does he? But the best part is, so many of my CF friends have found me. It is so exciting to see a new person has added me to their list. And it is funny that I spent so many years trying to disassosciate with the CF world to find that the very people I didn't want to know have come to be the ones I enjoy and who have accpeted me the most. How things change. Thank you, O valiant Cfers (and people who love Cfers), I love you all!
2 comments:
I also just attempted to start the process of starting an advisory group (how's that for a great sentence!). I will let you know how it goes and be interested to see your process!
Take care,
Lisa
I think your idea is a great one!
If they won't give you the other patients' email addresses (and maybe they can't because of privacy issues), ask them if they will contact the patients to explain what you want to do (have an online/email support/suggestion meetings) and give your email address to the other patients at that time.
Good luck!
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