East Central Minnesota Chapter

[Red]

Today was the 1st East Central Minnesota Vaculitis Chapter support group meeting in Pine City Minnesota.
Kami and family worked hard to develop this chapter ,bringing us all together and providing a support system.Thankyou

[drz]

Today was the 1st East Central Minnesota Vaculitis Chapter support group meeting in Pine City Minnesota.
Kami and family worked hard to develop this chapter ,bringing us all together and providing a support system.Thankyou

How did go? Attendance? Details please?

[pberggren1]

I met another Weggie today. It was very nice to say the least.

[mishb]

Excellent job Kami :thumbsup::thumbsup:

Well done Phil, I haven't met any other yet but when I go into the hospital for either my ENT or Rheumy appointment (2 different floors), I do look around me and wonder.......hmm, I wonder if you are.

[annekat]

Nice to hear about the success of the support group in Minnesota. I haven't yet met another Weggie that I know of, but I know of some floating around in my area, some on this forum and some maybe not. I hope it will happen someday!

Anne

[pberggren1]

Nice to hear about the success of the support group in Minnesota. I haven't yet met another Weggie that I know of, but I know of some floating around in my area, some on this forum and some maybe not. I hope it will happen someday!

Anne

They are probably floating around due to the pred........lol.

[annekat]

They are probably floating around due to the pred........lol.Probably so.:smile1:

[Kami]

ThanksRed!

Fornever having had one before I think it turned out pretty good! I get so nervous talking in front of peopletoo! I didn’t pass out or throw up oranything so I think it was a success, ha ha!

Wehad 14 people total. 7 Weggies and 7people that were family members. I wastold that if we got 3 people to start we’d be doing good so I am really happywith 14!! I think it was a good sizegroup too for sharing and everything.

Ournext meeting will be around the end of April and we are going to have a speakercome and explain our Lab Tests. Details tofollow once I get it all nailed down.

ThanksRed, I am so glad you were able to come!! I think this group is going to be good for all of us. I wish everyone on this website could come!!

[Kami]

I copied and pasted that message and it slammed my words together - sorry!!

[Tim Roberts]

I too have to commend Kami and family for doing such a wonderful job with hosting and organizing our very first meeting. As one of the attendees, it was the first time I had ever met anyone else with wegener's and it was very interesting to see how much the same we are and also how different the disease can be for all of us. It was obvious to me that it is not only we who struggle with the daily ups and downs of this disease, but also how our supportive familes struggle with their role as well. I can't wait for the next meeting and keep up the great work Kami, you were wonderful!

[marta]

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]

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!

[Kami]

Thank you Time and Red for showing up and not leaving me sit in the library by myself all day! !

Sorry, should say TIM not time. I have a hard time with this message stuff lately. Sorry!