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XMRV International Advocacy Strategy: Help us start a Facebook page?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by parvofighter, Dec 21, 2009.

  1. Carla-nl

    Carla-nl Veteran by now

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    I Guess you've found us :)


    Hiya all, i guess you've found us :) yes, it's Prickles' (Holly's) and Carla-nl's site.

    MY SINCERE RESPECT for everything you've done in this effort. I was truely impressed with the draft papers i received this morning, even more now that i've read this thread. I believe one of you is going to announce Diagnose Supports involvement in the Global Effort here on our behalf as i'm pressed for time due to a family crisis.

    I just wanted to stop by and say THANKS for taking this up and to compliment each and every one of you for stepping up !

    We'll be back after the holidays.
    Carla
  2. Frickly

    Frickly Senior Member

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    To Group

    Ok....I have created a facebook page and linked it to the cause. Currently, only the admin can post on the page but discussions can take place on the cause. We can come back to this after Christmas and figure out how we want to organize this. Parvo, I figured out how to make you an admin and will do that shortly.

    I hope everyone has a nice holiday.

    http://www.facebook.com/pages/XMRV-.../pages/XMRV-Global-Action/216740433250?ref=mf
  3. shrewsbury

    shrewsbury member

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    YAY Frickly. Thank you for such a wonderful holiday gift.

    May your holidays be all you wish for and may 2010 be better for all of us.
  4. Recovery Soon

    Recovery Soon Senior Member

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    Mission Statement

    XMRV GLOBAL ACTION NETWORK

    Mission Statement- To galvanize a massive international fundraising and advocacy movement whose aim is to restore dignity to patients and quickly find a cure for a host of related neuro-immune diseases, including CFS, ME, Autism, which are debilitating, transmissible and potentially deadly for tens of millions of global citizens.
  5. parvofighter

    parvofighter Senior Member

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    Diagnose Support joins XMRV Global Action

    To the followers of XMRV Global Action

    An early holiday gift! We are thrilled to announce that Diagnose Support will be officially joining our voices as a key European voice at XMRV Global Action. If you have not had a chance to visit the Diagnose Support website, I highly recommend it as a wonderful example of how European countries are already helping each other with respect to XMRV: http://diagnosesupport.com/main/component/option,com_frontpage/Itemid,164 . A vital component of Diagnose Supports expertise has been in enhancing access to information about the XMRV retrovirus, as many patients do not speak English, and this alone might prevent their access to groundbreaking XMRV advances. This point bears repeating, as the success of any global XMRV advocacy effort will depend on our ability to make XMRV research and news documents accessible in many languages around the world. Buy-in to the significance of the XMRV findings and the implications for diagnosis and treatment of these neuro-immune "Medically Unexplained Diseases" - is entirely dependent on international patients being able to access up-to-date XMRV news in their own language. Additionally there are profound differences across countries in how XMRV-related illness are validated or disenfranchised. A global effort will target the reduction of those inequities in XMRV information and care.

    The Diagnose Support team is already providing an invaluable service in translating the mostly-English language XMRV news updates to the European Community. They have regular editors in the following countries: The Netherlands, UK, Spain, Germany, and have translators for: Dutch, Spanish, French, German, Danish, with more to come as they too are just getting started.

    In addition, the Diagnose Support team has offered additional tangible support to XMRV Global Action in coordinating European efforts, sharing database space, resources and networks, and information flow up and down. They have offered to participate in the technical aspects of building the XMRV Global Action site and it's content, and have available space on their database for a Global XMRV Team forum. All if, and when required. Their team members all have a business background, and this already shows on their website.

    Rest assured that as we build strategic partnerships with XMRV patient groups worldwide, we will continue to seek out opportunities to leverage existing capabilities, so that we dont reinvent the wheel. The exact nature of these partnerships will unfold as more members come onboard and express their voice in this global advocacy movement at XMRV Global Action.

    Finally, I wanted to share the www.diagnosesupport.com byline: Give Europe a Voice! which certainly speaks to our global mission.

    So a big THANK YOU! to the European team at Diagnose Support! More to come after the holidays, looking forward to this new adventure!:)

    If you or your XMRV patient organization would like to join XMRV Global Action, please visit the following links below and voice your support for our global advocacy movement:

    Facebook Group: http://www.facebook.com/pages/XMRV-G...0433250?ref=mf#/pages/XMRV-Global-Action/216740433250?ref=ts
    Facebook Cause: http://apps.facebook.com/causes/421525
    Website (coming soon): www.XMRVGlobalAction.org
  6. parvofighter

    parvofighter Senior Member

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    Donate issue

    Just a housekeeping note. I did notice that our Facebook cause has a "donate" button. Can we arrange this asap so funds go to WPI, and so this is clearly indicated?:)
  7. Frickly

    Frickly Senior Member

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    Parvo,

    I will look into that.

  8. Frickly

    Frickly Senior Member

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    Ok...added WPI donation button.
  9. Frickly

    Frickly Senior Member

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    Recovery Soon

    That sounds awesome! We are discussing tweeking the mission statement after Christmas and welcome your input. Let's talk more about it after Christrmas. I am tired....:eek:

  10. txfriend

    txfriend

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    Wonderful! I have joined and donated!

    Incredible job, you guys. I am SO IMPRESSED. I'm pc illiterate, so I
    am not able to help, but will support you in every way I can.

    Just a thought: Don't think Autism, even though implicated in the
    XMRV study, is considered life threatening...or transmissible.
  11. OurDayWillCome

    OurDayWillCome

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    @ Frickly... re this on the Causes page:

    WHITTEMORE PETERSON INSTITUTE FORNEURO IMMUNE DISEASES

    Needs a space between FOR and NEURO.
  12. OurDayWillCome

    OurDayWillCome

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    ^ Things like that make me nuts. :eek:

    Can you fix it, Frickly...or we just have to live with it?
  13. Frickly

    Frickly Senior Member

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    Yes, I noticed this and am unsure if I can fix it but will look into it. I did not type this but was automatically pulled up when I selected WPI as our beneficiary.

  14. Frickly

    Frickly Senior Member

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    Charityfundraiser

    Thanks, hopefully they will fix it.

  15. Frickly

    Frickly Senior Member

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    Update

    Thanks Cort for anouncing our facebook page on Phoenix Rising. I was surprised that we got such a huge response and already have 160 members of our cause and all of this over a holiday. I am working with Parvo to get a skeleton of the website started but we will need help. We can start discussing organization and enlisting help for specific jobs. Will be back with more later.
  16. shrewsbury

    shrewsbury member

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    Very cool that we've had such a great response so soon Frickly!

    Clara Valverde’s submission below to co-cure was posted on Dec 8, 09 but I just saw it today.

    XMRV: World-wide petition and video.

    Watch it, sign it and pass it on to your contacts:

    Wondered if y'all had seen it yet. Maybe a good contact, potential link on the page and some ideas too.
  17. Frickly

    Frickly Senior Member

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    Thank you!

    I added this info to our cause and page.
  18. txfriend

    txfriend

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    Video is Great; Petition Isn't...

    I saw the video, which is great, but the petition is so full of poor
    sentence structure, grammar and punctuation, I would like to see
    someone edit it to reflect Americanism, LOL. Also, at the end of the
    page, after "Sign the Petition", there is a paragraph saying something
    to the effect it was written by the CFIDS Association of America,
    with the author's name, which I've forgotton, of course. I think the
    author means it was written FOR all the CFIDS orgs OF America,
    but really think someone needs to check it out and get it edited
    with the author before putting it on the G.A. site. It leads me to
    believe we better be careful what we repost onto our site, with
    the information looked at closely, in order to stay professional
    looking.
    What do you think?
  19. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    I had the same thoughts, txfriend...didn't know quite how to address it with the petition's creator - ?
  20. Frickly

    Frickly Senior Member

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    Fresheyes

    I posted right when the forum went down.:cool: FE check your private messages as I left one earlier. TXfriend, thanks for the feedback. As we get organized I think we will have a group that can come to a consensus about what we post on facebook. We are holding off due to a death in Parvo's family and family obligations due to the holidays. I can't wait for my children to go back to school.:D Happy new year to all.

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