User Tag List

Likes Likes:  0
Results 1 to 9 of 9

Thread: Nyc

  1. #1
    Join Date
    May 2016
    Location
    New York
    Posts
    23
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Nyc

    I am new to this elite group and would really like a meetup in NYC if anyone is around town. There doesn't seem to be any support groups in Manhattan at this time.
    I have so many topics that I would want to discuss. As much as I love having this forum for support I think a get together would be great.
    Keep me posted if anyone is interested.
    -Susan

  2. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,154
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default

    You may also want to try the Vasculitis Foundation. They have chapters all over the country.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  3. #3
    Join Date
    May 2016
    Location
    New York
    Posts
    23
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Nyc

    Quote Originally Posted by Pete View Post
    You may also want to try the Vasculitis Foundation. They have chapters all over the country.
    Hi Pete,
    Thank you. I did reach out to them and at this time there are no groups specifically for GPA.
    They did send me some information regarding the disease. I will attend the next conference that is in the Tri-state area. Not sure when that will be, but, I am not in a rush. This will be hanging around with me for a long time. It was getting over the initial sucker punch that was tough.

    I appreciate your input.
    Best,
    Susan

  4. #4
    Join Date
    Apr 2011
    Posts
    239
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Susan, The reach email for the Tri State chapter, listed on the foundation's site was: [email protected]. I think they met in Dr. Lebovics office, but I heard they haven't had a meeting in a while. I would try sending Gail an email. Same thing for the Long Island branch ([email protected]). They are groups for all forms of vasculitis but, at least on Long Island, most members have GPA. A few members of the Long Island branch did met for coffee a few months ago because there was a new person who was still struggling with a diagnosis.

    I think what happens with the groups is when newly diagnosed, folks need a lot of help & the groups fill that need. Then most people get better & they get on with their lives & there is less interest in the group. Maybe if you contact Gail, she may know of patients that you could meet. Hope this helps.

  5. #5
    Join Date
    May 2016
    Location
    New York
    Posts
    23
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi JeanMarie

    I will reach out to Gail and see if she has any group meetings set up on the calendar, and or, she will at least have my contact information for future mtgs.

    Thank you so much for your response.
    -Susan

  6. #6
    Join Date
    Aug 2016
    Location
    Southern NH
    Posts
    333
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Susan,

    I'm a bit far (in NH) and new myself. I think I read somewhere there are national conferences tho. I'd be interested in that. Anyone have info?

    Thx,
    Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

  7. #7
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,154
    Post Thanks / Like
    Mentioned
    10 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Susan,

    You're welcome. The VF chapter meetings I attend seem to be populated mostly with GPA patients.

  8. #8
    Join Date
    Mar 2014
    Posts
    188
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Susan: I live in NJ and see my docs in Manhattan every few months. I expect to see them in Oct and Nov. If meeting a fellow GPA traveler will help allay concerns, send me a PM. I can try to schedule appointments with my docs on days that convenient for you as well.

  9. #9
    Join Date
    May 2016
    Location
    New York
    Posts
    23
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default

    Quote Originally Posted by MaxD View Post
    Susan: I live in NJ and see my docs in Manhattan every few months. I expect to see them in Oct and Nov. If meeting a fellow GPA traveler will help allay concerns, send me a PM. I can try to schedule appointments with my docs on days that convenient for you as well.
    Hi Max That sounds great. I work midtown near Bryant Park, But can go up to Columbus Circle if you'll be going to Dr's up there.
    I don't know how to send PM but if you send me one then I can respond to it.
    Thnx,
    Susan

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •