if anyone is interested, pls respond w/ideas

Discussion in 'Fibromyalgia Main Forum' started by mamafurr, Jul 17, 2003.

  1. mamafurr

    mamafurr New Member

    this is a copy of email sent to sandy/hiriskrn

    i also intend for our walk/whatever to televised on the new/locally nationally.

    hi sandy, this is alice "mamafurr" from the fm board. i thought i would write you first before posting and let you know what would like to accomplish.

    i live in grass valley, ca, which is 1 hr out of sacramento and 1 1/2 hrs from reno, nv. so i contacted the "american chronic pain assn" which happens to be a non-profit world wide org that also happens to have its main ofc in rocklin, about 30 mis from me.

    my idea is to have a "walk" - probably not very far for some like me :), or some type of thing like "race for the cure" for cancer for fm and maybe cfs but don't know for sure if they go hand in hand. i think i probably have both, but know i have fm for sure and was diagnosed in 1990..

    so i don't know how to proceed. i spoke to monica, the assistant to the founder , penny, and she gave me alot of valuable info, and she is having penny call me back. monica suggested that i become a "facilitator" i guess for a support group.

    originally i thought i would put an ad in the 3 local/sacramento area papers, to have fm people contact me. but thought better not do that yet. baby steps
    we used to have a fibromyalgia support group up here that met locally in the hosp but it is not in the paper any more. i am to call another person that ran the local group that they hadn't heard from for awhile, but thought i would drop you a quick note first while my brain is functioning. after 2pm things get fuzzy :).

    i will post a copy of this on the board. everyone has great ideas but i think we need to start locally. i am thinking of making a flyer with my name and phone# or email and putting it in all the local drs offices, (orthos, gps, rhuemys) any others? with what we are trying to accomplish, i could get a feel for how many people are in my area w/this dd.

    i am thinking a target date will be next may, on fm awareness day. there is alot to do and organize so that gives me some time. also september is "pain awareness month".

    the acpa has free tool kits they will mail out to anyone in the nurse's assn.


    [This Message was Edited on 07/18/2003]
  2. mamafurr

    mamafurr New Member

  3. stilhere

    stilhere New Member

  4. kmelodyg

    kmelodyg New Member

    I'm bumping this up for you hon! This does deserve a response! I think that it is a great idea to start planning a fund-raising walk. I am sure if I can get a local support group going, I can plan a walk as well.

    I used to do quite a bit of fund raising when I was in school, so I do have the experience on what to do. Good for you for getting it going in your area!! Keep me up to date on what you find out!

    Lots of Love,
  5. mamafurr

    mamafurr New Member

    bumping my msg
  6. teach6

    teach6 New Member

    I have a high school friend who lives in Grass Valley! We got together for the first time in over 30 years after my son's wedding in Sacramento in April. Small world!

    I like the idea of a walk/race, but we should not be the people In it. I'm not even sure I'm up to helping with the organization. I think it needs to come at a national level, like the CFIDS Association.

    One day I'll feel all excited about something like this and then reality sets in again and I realize I cannot be one that is counted on for something important like that. I have to do things on a very small level, at my own pace.

  7. mamafurr

    mamafurr New Member

    wow, interesting!! grass valley is not a big town..oh about 9000 or so. she probably lives across the street from me LOL. i so understand this "walk" issue. maybe we need to have a "sit-in" just like the old days. i am going to do this...i am going to contact every fm support group in the web and there a quite a few. i am going to join each one and get as much info as i can and share w/you all.

    it was nice meeting you
    p.s. i guess you live in ny? had you been to CA before? my daughter lives in sacramento
    take care
  8. mamafurr

    mamafurr New Member

    could you please explain what you mean? about the email thing/thread? ohhhh i'm so foggy i don't have the energy to figure it out LOL...