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

[Carla-nl]

I Guess you've found us

It's happening... Take a look at http://diagnosesupport.com/main/content/blogsection/24/174/ A great website, and they also have:
A list of national efforts and translations ... & reposted publications per language:

• Dansk / Danish
• Deutsch / German
• Espaol / Spanish
• Franais / French
• Italiana / Italian
• Nederlands / Dutch

Also see the following on Facebook: XMRV campagne voor CVS,ME,FM,MS,Autisme,Etc. in Nederland & Belgi http://www.facebook.com/pages/XMRV-...n-Nederland-Belgie/216692830498?v=wall&ref=nf . I'm assuming this means XMRV Campaign for CFS, ME, FM, MS, Autism, etc. in the Netherlands and Belgium.

Could someone connect with these folks and give them our link? We can help each other make this XMRV action a global wave. Strength in numbers.

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

 

[Frickly]

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

 

[leelaplay]

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

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.

 

[Recovery Soon]

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.

 

[parvofighter]

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

 

[parvofighter]

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?

 

[Frickly]

Parvo,

I will look into that.

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?

 

[Frickly]

Ok...added WPI donation button.

 

[Frickly]

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....

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.

 

[txfriend]

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.

 

[OurDayWillCome]

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

WHITTEMORE PETERSON INSTITUTE FORNEURO IMMUNE DISEASES

Needs a space between FOR and NEURO.

 

[OurDayWillCome]

^ Things like that make me nuts.

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

 

[Frickly]

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.

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

WHITTEMORE PETERSON INSTITUTE FORNEURO IMMUNE DISEASES

Needs a space between FOR and NEURO.

 

[Frickly]

Charityfundraiser

Thanks, hopefully they will fix it.

^ Hm, we could try asking the database owner organization to fix it.

P.S. I just sent GuideStar an e-mail to fix the typo. Not sure if they need it officially from the WPI but we'll see.

 

[Frickly]

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.

 

[leelaplay]

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.

 

[Frickly]

Thank you!

I added this info to our cause and page.

 

[txfriend]

Video is Great; Petition Isn't...

I added this info to our cause and page.

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?

 

[fresh_eyes]

I had the same thoughts, txfriend...didn't know quite how to address it with the petition's creator - ?

 

[Frickly]

Fresheyes

I posted right when the forum went down. 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. Happy new year to all.