East Central Minnesota Chapter

**marta** · 02-29-2012, 09:01 AM

Kudos Kami. That is certainly an achievement. You wanna come this way and show me how you did it - ha ha. I've made some great friendships on here and would love to meet some of the people I've been corresponding with regularly. As for speaking in front of people and not throwing up, that is a huge achievement in it's own right. I have to do the same tomorrow and am so nervous - but I'm only telling you people cuz I know none of you will be there. I'm hoping a lot of people turn up because of the work involved and the awareness opportunities, but also secretly hoping that it's not that many so I don't really make a fool out of myself. Not only am I speaking, but also modeling pajamas - one of the two will make me throw up (or the audience throw up - ha haha)

Super awesome work you've done. Kudos again.

**Kami** · 03-02-2012, 09:42 AM

Thank you Tim! All I did was get a bunch of us in the same room. Thank you Time and Red for showing up and not leaving me sit in the library by myself all day! Our group is only as good as it's members so it's really thank you to Tim and Red, seems we have some really good members!! I appreciate everyone that showed up so much. This group is really for my own sanity too. It was wonderful to be able to share experiences. I am so glad the family members were able to participate too, sometimes I feel they don't get to or want to express their frustrations because they are looking out for us.

As for our next meeting I talked to a NP today and she has agreed to come and talk about labs with us! Yay! I am so excited. Details to follow when I get it all organized.

Marta how did your RARE DISEASE DAY go?? I am sure you did wonderfully!! I am proud of you and thankful for your help in spreading awareness!!

Take care All!