Orginization set-up

    • Anonymous
      March 13, 2009 at 12:36 pm

      Hello all,

      well its offical i started the planning for a support group in my community, in my original plans it was going to be a support and informative group on Guillain
      -Barre syndrome but then i realized its to generalized so i widened my focus its now going to be a support group for anyone going thru a hard time in there life, i will give my story and how i got thru it all in hopes to show that you can get through anything if you set your mind to it… it will be for those who did not choose to be in hard times, i believe its different for people who went through something life altering without a choice. Such as people diagnosed with serious illnesses or injuries or other incidents. I dont believe its fair for helpless people to be in the same support group with people who choose to be in trouble. Such as alcholohics or drug addicts, no offense if anyone reading this is a case like that because they have their reasons to, but they belong into a different support group, if anyone can offer any information or help dont be afraid to mention it. Thanks

    • Anonymous
      March 13, 2009 at 4:53 pm

      Wow, it’s a great idea

      I’m also thinking of doing something to help people who went through GBS, I’m still not 100% recovered but when I have more energy I would like to volunteer for the British GBS organisation and go to hospitals to offer support to people with GBS.

    • Anonymous
      March 14, 2009 at 1:19 am

      I Would LIKE To Talk Or Help Get One Started Where I Live In Riverside Area , Ca. I Cant Seem To Be Able To Find A Group. I Am Going On 2 Years And Recovery Is Very Slow.

    • Anonymous
      March 14, 2009 at 10:47 pm

      You should each contact the foundation to see if there is a support group already in your area. That is what we, as liaisons, are supposed to do. If there is not a liaison in your area then the foundation may be able to work with you to help set it up with their support and approval. Believe me, we can all use the emotional support that others can give.

      good luck

    • Anonymous
      March 15, 2009 at 2:31 pm

      The Liason For My Area Isn’t Holding Any Meetings. I Called Another And Again No Meetings. I Am Recovering Very Slow And Could Use Some Face To Face Support.

    • Anonymous
      March 15, 2009 at 7:12 pm

      Hello Tina,
      I don’t know which liaisons you have called, but if you have not called the one in Whittier, I would do so. While she may not be able to give you face-to-face time, she will talk on the phone. She may be able to suggest others closer to you who could help out.

      You could talk with me if you want, but as I have a well controlled case of CIDP, I am not sure what I could offer you.

      To all in general,
      Please don’t be hard on the liaisons if they are not holding meetings. A lot of them suffer from residuals and find it hard, just like we all do, to have enough energy to do everything our lives demand.


    • Anonymous
      March 22, 2009 at 9:45 pm