Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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New Chase Coalition ACTION NEEDED

Discussion in 'Action Alerts and Advocacy' started by helen41, May 23, 2011.

  1. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    I am going to post vote numbers as a gift from WPI on the Facebook page of Rett to try to attract some interest. I don't know what else to do
     
  2. Dolphin

    Dolphin Senior Member

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    Thanks Helen. Following your message, I just posted this on the wall of the International Rett Syndrome FB group:

    If people want to "like" it on: http://www.facebook.com/RettSyndrome?sk=wall it might draw some attention to it and show that there are a few of us (at least) watching them. Of course, other messages might show that better.
     
  3. OneWaySurvival

    OneWaySurvival Senior Member

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    Great idea, Dolphin. Thanks for the link to their official Facebook page so we can add comments too. I think Helen is right, we need to act quickly to get this alliance off the ground! I think it's important to ask Rett voters to leave us a comment letting us know they're helping us so more of us will be motivated to help them. One of their recent comments on their Facebook wall says they are really concerned about dropping to 13th. Well, WPI voters can help. And if they have a vote to spare, maybe they can share with CAA too, but since they're already uniting with Marfan, I'm putting first priority on WPI, then CAA next.

    Helen, if you're posting "gift numbers" from WPI, go ahead and count my vote. I'm not sure how you'd keep track...maybe a poll? But that wouldn't reflect friends of friends, or silent voters, but it's a start. I'd be really encouraged if I saw a single person from Rett vote for us. Then we could get it rolling.
     
  4. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    because I'm a contester, when people vote my requests, they post what # vote it was to show they really did do it. I just copied down what was generated today and put it on their wall. I now notice that Marfan has CFIDS on their wall as an ally, but still nothing from WPI. I think Marfan is being really smart here by taking the initiative. Does anyone know who to contact at WPI to try to move things along?
     
  5. Dolphin

    Dolphin Senior Member

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    Will try to remember about the # thing again. I have one vote yet and might still use it.
     
  6. Dolphin

    Dolphin Senior Member

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  7. OneWaySurvival

    OneWaySurvival Senior Member

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    Cool. They included WPI at the end! (finally!) Now maybe we'll see something similar with Rett? I hope?

    I agree with Helen that it would be good to get something formal from WPI too between these 2 groups (worth a try if someone can contact WPI/Andrea/Annette?), but they've used up 4 of their alliance votes (WPI, CAA, Epilepsy and Vision), and it might be awkward to try to pick only 1 more out of Marfan and Rett. As much as I like the Vision group, it's too bad the WPI didn't align with these bigger vote getters that have more serious health issues like Marfan and Rett. They seem like perfect matches. It doesn't stop the rest of us from doing an informal alliance though, let's keep trying!
     
  8. Dolphin

    Dolphin Senior Member

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    FWIW, I got a spam e-mail from VisionQuest and there was no mention of the WPI.
     
  9. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Thanks for contacting Marfan and Rhett groups. These alliances are very important. The ideal strategy would have been to get WPI to agree to a 'rotational' strategy where it promoted each of its partners in proportion to their ability to get votes (with their place in the standings as a proxy for this). They could still do this, but it looks like they are not on top of this particular issue of alliances quickly enough (not a criticism, they are busy with lots of things of course).
     
  10. charityfundraiser

    charityfundraiser Senior Member

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    Helen, the CFIDS Association did not delete your post. It is there. You need to click on "Most Recent" posts to see posts by everyone.
     
  11. Dolphin

    Dolphin Senior Member

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    Yes, they're very close. And that matters not just in terms of us but also if we're asking them to vote - they're less likely to do it with a close competitor, I would think.
     
  12. Hope123

    Hope123 Senior Member

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    For those counting, a friend just voted for the Retts and Marfans groups and posted on their pages for me.

    She has a vote left. Which group would you like her to post on?
     
  13. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    this is on the Marfan FB page
    National Marfan Foundation: I spoke to someone at WPI, but they haven't confirmed I went ahead and included them in our notice and in the email we sent out to over 16,000 people. Their voting link is there, even if their logo isn't...

    I don't know if we'll make it to $200.000, but it won't be for lack of trying on their part
     
  14. Boule de feu

    Boule de feu Senior Member

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    I have one vote left. Tell me what to do.
     
  15. Dolphin

    Dolphin Senior Member

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    Perhaps a group will come begging tomorrow so it doesn't have to be used straight away. We can get people who are good at actually filling in the box (rather than voting for another group but not doing that), it's useful.
     
  16. OneWaySurvival

    OneWaySurvival Senior Member

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    New Vote Getting Strategy

    I like the profile pic logo idea, charityfundraiser.

    Here is another idea that is suddenly proving very successful in getting "hold out" Facebook friends to vote for ME/CFS. Check out my blog post here for how it works:
    http://forums.phoenixrising.me/entr...that-is-suddenly-waking-up-our-friends-to-WPI!

    I've been wondering today why more people from the ME/CFS Forum aren't posting strategies here, and vice versa. This seems like a great time to work together. So, I did just go over there and see that they have a wonderful thread titled "How can we help the WPI earn money from the 'Chase Community Giving' program?" Dolphin, I noticed you are a member there and here. If you think my blog entry is helpful, will you post it there on that thread? (sorry to call you out and pressure you like this...I'm just trying to be efficient...I've already worn myself ragged today and feel really sick-which is why I'm not a member of multiple forums, but I think this will all be worth it in a couple days!)
     
  17. Kate_UK

    Kate_UK Senior Member

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    What about forums for Gulf War Illness, Lyme, autism?

    when you look at the WPI page here for voting,
    http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo
    it says


    so people with those illnesses should be voting too, if they knew about the vote.
     
  18. Dolphin

    Dolphin Senior Member

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    Sorry, would prefer if somebody else would do it for various reasons incl. workload. Maybe justinreilly or somebody else could. Best of luck.
     

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