$$$ for WPI vote daily now in Vivint Round 2!

[Aileen]

that's a good idea. maybe we need to be marshalling those resources. Right now WPI is looking pretty solid, while ME/FM action continues to lose ground. For today I think I will support ME/FM, just to try to slow down the hemmorrhage. maybe if we could marshall the other groups who would not support WPI there is a chance. re Nightingale, I nominated them (along with ME/FM action). I emailed Nightingale to let them know and never got a response. As far as I can tell, they didn't generate any votes

Aileen, would you be willing to contact IACFS/ME

Sorry I haven't gotten back to you. Had to go out yesterday and it took everything out of me. As far as the IACFS/ME goes, as a Canadian I don't feel it is my place to ask an American charity to vote for a Canadian one. I've been complaining about Canadians not backing our charity so it would be really hypocritical of me to ask Americans to back a Canadian one. I think it is up to Americans and Americans only who they decide to support.

Unfortunately I think we may have a serious problem on our hands because of the rule change. Who ever heard of changing the rules in the middle of something??? I'll IM you.

 

[Sasha]

I've just started a new thread to try to tackle this "Facebook phobia" issue head-on. It seems a crucial issue for us. Here's the link.

If someone posts on there with a worry or question about Facebook, I know you'll all be nice and supportive! I do think that people unfamiliar with Facebook have understandable worries. Sometimes, when put on the spot, they know they're worried but can't put their finger on why and some can come out with something that doesn't sound like the real reason because it's not. I've put that thread there to be helpful rather than confrontational - we'll get more punters that way!

Please take a look and tell me if anything's incorrect - I'll be going to bed in 15 minutes!

I'm a Facebook ignoramus (my sister told me about the "friends" stuff!) and am unlikely to be able to answer additional questions - I hope experienced Facebook users will chip in!

 

[SpecialK82]

Thank you Eric for the IACFSME email, I just sent them a messsage asking for support in Canada.

 

[Boule de feu]

Just got back. Need to know who to vote for at this point.
WPI or CANADA?

 

[Dolphin]

Just got back. Need to know who to vote for at this point.
WPI or CANADA?

No easy answer to that. There are good reasons to vote for either.

 

[cfs info]

Just got back. Need to know who to vote for at this point.
WPI or CANADA?

The Canada really needs the vote support so we'd appreciate it if you voted for us. Thanks

 

[Dolphin]

Votes after 15 days (1/5 of the contest)

Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.

Pacific:
Whittemore Peterson Institute: 13605 + 1002 = 14607
Be Perfect Foundation: 6231 + 387 = 6618
Conejo Valley Friendship Circle: 5521 + 206 = 5727
Surfers Healing 3967 +289 = 4256

Canada:

Light and Love Home- Vancouver 8179 +662= 8841 (their numbers are going down a little)
Saint John Regional Hospital Foundation 3941 + 297 = 4238
6th: National ME/FM Action Network 1229 + 176 = 1405

Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 28537 +3199 = 31736
Team Sanfilippo Foundation: 28179 + 3210 = 31389
CHERUBS: 21325 + 1627= 22952
International Rett Syndrome Foundation 14655 + 1353= 16008

Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.

That means these are the Votes after 15 days (1/5 of the contest)

Pacific:
Whittemore Peterson Institute: 14607 + 964 = 15571
Be Perfect Foundation: 6618 + 322 = 6940
Conejo Valley Friendship Circle: 5727 + 255 = 5982
Surfers Healing 4256 +241 = 4497

Canada:

Light and Love Home- Vancouver 8841 +585= 9426
Saint John Regional Hospital Foundation 4238 + 281 = 4519
6th: National ME/FM Action Network 1405 + 167 = 1572 (a slight reduction on the 176 from the previous day)

Overall (groups ahead of the WPI):
Foundation for Angelman Syndrome Therapeutics (FAST): 31736 +3056 = 34792
Team Sanfilippo Foundation: 31389 + 3013 = 34402
CHERUBS: 22952 + 1535= 24487
International Rett Syndrome Foundation 16008 + 1283= 17291
5th (overtook the WPI) Journey 4 A Cure Inc 14252 +1645= 15897

 

[maryb]

I voted for the Canadian charity today - they don't look like they are getting many people behind them.
As long as WPI are streets ahead I'm okay with doing that, would be nice to see some more support for them though.
Please alert us though if anyone thinks WPI rivals are closing the gap too fast.

 

[cfs info]

Thanks Maryb. Thanks Dolpin for the stats monitoring. It was very uplifting this morning when I went to vote to see that the National ME/FM Action Network has moved up to 4th place and we could easily take over 3rd spot if WPI supports where to help us for at least a few days. WPI is now comfortably 9000 votes ahead of their competition. Our supports could really do with a moral boost. Your support would be greatly appreciated.

 

[cfs info]

PANDORA supports voting for National ME/FM Action Network

This email message was just posted in Facebook: Can we do what she recommends?

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

From: "Marly C. Silverman"
Date: June 28, 2011 9:02:59 PM EDT
To: "Marly (Marla) Silverman"
Subject: Vivint Gives Back Strategy - please share with others



FYI -


WPI now has 15,558 votes they are ranking nbr one in their Pacific region ahead of the charity as ranking as number 2 by a whooping 8,606 votes. I urge you to spare your vote for the National ME/CFS Action Network tomorrow and for the next few weeks. It would give a chance to the National ME/FM Action Network to also win in their region $100,000.


WPI is in a solid position to win number 1 in the Pacific Region. The odds of them reaching number one within the top 100 charities is unfortunately against them, because the current number one charity across all regions currently has 34,487 votes meaning that WPI would need 18,959 votes today to catch up to them, and in the weeks ahead, would have to maintain that speed every day.


I would not say that you are wasting your vote because WPI is a worthy charity and well deserving of our unwavering support and daily efforts. But the great thing to do is to ensure another organization within our community gets another capital injection too in the amount of $100,000.


This is why there are the different regions. To spread the wealth around. Here is our great opportunity I hope you reconsider your approach and bring your daily vote to the National ME/FM National Network from now on, while keeping an eye on the daily voting for WPI as well, because we want to ensure we keep them as number one too in their region.


Mathematically speaking you would be giving 60 votes to this charity in Canada - one daily vote for the next 8 weeks and 4 days.


One hundred individuals voting for the next 60 days would mean an additional 6,000 votes for the charity in Canada.


200 individuals voting for the next 60 days would mean 12,000 votes, most likely placing this great charity in Canada in the number one and if not, it would be running neck in neck with the current charity in the Canada region.


300 votes it would blast our charity in Canada firmly to number ONE in the Canada region. Thank you for all that you do!
In Good Health and In Beauty,
Marly "Marla" C. Silverman
Founder
P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
255 Alhambra Circle, Suite 715, Coral Gables, Florida 33134 - Volunteer Help Line: 954-783-6771
www.pandoranet.info
Built on Hope - Strong on Advocacy - Finding a Cure through Research.


Support the NeuroEndocrineImmune (NEI) Center




Together we can make a difference!

 

[SpecialK82]

I don't have any replies back from the IACFS or the Nightingale Foundation, but I've noticed that there wasn't any votes for the IACFS yesterday (usually 3), we will see if that continues. Unfortunately, Nightingale received 8 votes again, this is so unfortunate when we really need them. If anyone has a personal contact with someone there, please call and ask them to switch to the Action Network.

I think most PWC's have become complacent with this contest since, at a glance, WPI looks like a shoe-in and Action Network looks like they have no hope. People are fairly good about voting each day, but no one (with the exception of some on here ) has any desire to go get more votes.

What do you guys think about starting a "Get one more Vote" campaign, put it on all the forums asking that people continue to vote for WPI but go out and "get one more vote" specifically for Canada. We are only behind by 450 - 500 votes per day, I think we have at least that many people logging on to the forums daily and it would be a snap if everyone helped.

Again, we will worry about closing the gap between us later.

 

[SpecialK82]

cfs info - I was posting the same time as you. I am SOOO excited that Marly has put out this statement basically coming to the same conclusions as us - Woo hoo, let's hope it makes a big difference!

 

[cfs info]

I think it's great Marly has issued a statement. I think we can both win. SpecialK82, I think there is definitely hope for the National ME/FM Action Network.
I also like the suggestion to get out the vote campaign. Any ideas on how to do that and stay within the rules?

 

[Sasha]

I'm switching my vote to NM/FAM for now - I think WPI is sufficiently in the lead that if there's a challenge, we'll see it coming far enough off if we keep tracking the figures.

Although I think there will be a certain number of floating voters ready to switch, I think the real big issue is that most people are simply not voting at all. There are still amazingly few Vivint signatures considering our numbers on the forum. Even if we could persuade everyone on Phoenix Rising who is now voting WPI to switch their vote (and I'm on the fence about wholesale switching this early in), I don't think it will be enough to help. We need more voters!

I think there are two things that would be a huge help.

First, anyone glancing at the current outcome can see that WPI is storming the Pacific but miles from winning the transregional at this point so won't see the point of voting WPI since existing voters are already doing what's achievable. They are unlikely to be reading the Vivint threads (they are all titled as WPI Vivint threads for Round 2, in fact) so won't be aware that there's another charity that could benefit from them joining in as new voters.

Can I suggest that someone starts a new thread called something like "Help Canadian Consensus charity get $$$ in Vivint contest" and posts a message explaining why they're a worthwhile group to support and what the voting situation is. I think it's best that someone who knows NM/FAM's background well does this (i.e. not me!). It would be good to get a mod to make it sticky.

Second, the more I see, the more that concerns about Facebook seem to be a massive, massive barrier to PWC signing up for a Facebook account and joining the contest. It would be great if people who are experienced with Facebook could take a look at the "Facebook Phobia" thread I started and answer some of the issues that people have raised - I'm wiped and am going to have to do less for a while and I can't keep on top of that thread. Thanks to all those who have posted on there already!

 

[jace]

Nooo... Don't do it....

If people listen to Marly Silverman, we could end up as a community with nothing, $0, just as likely as winning two regions. Have you got a crystal ball? I haven't, so I have no idea what rabbits will be pulled out of the hat by other Pacific charities to challenge the WPI's lead.

A bird in the hand is worth two in the bush...

It is also too early to dismiss the WPI's chances of winning overall. Marly says

The odds of them reaching number one within the top 100 charities is unfortunately against them, because the current number one charity across all regions currently has 34,487 votes meaning that WPI would need 18,959 votes today to catch up to them, and in the weeks ahead, would have to maintain that speed every day.

Um, this surely doesn't mean the WPI would need 18,959 votes a day does it? It is just badly written, isn't it? Actually, at two weeks in, the WPI needs a bit more than double the votes every day to win overall, from this point, if other charity's votes remain constant. So, a bit more than double what we have been getting so far would do it.. So if everyone could find a way of a bit more than doubling their votes from friends, family and wherever else, then the WPI would be in with a chance of the top prize of $250,000, without risking the $100,000 at all.

Consider, the WPI facebook page has 4,000 likes. 2,300 votes daily is not unrealistic. Why there are only 1,000 of us voting for them, when many of those votes are from family and friends who do not have ME, and have not 'liked' the WPI on facebook, I fail to understand.

People can always set up a 'voting account' if they are worried about personal security.

1) Create a new free email account to use with facebook so there is no chance of compromising your existing email account. There are loads of suppliers, hotmail yahoo and gmail are the biggest.
http://email.about.com/od/freeemailreviews/tp/free_email.htm

2) Create a Facebook page. You need a first name and a last name, but it does not have to be your real first and last name. If Facebook requires info you don't want to give, just make up a fictional answer. Just make sure you give a working email address, because they will verify that.

I think the National ME/CFS action network supporters should swap their votes to the WPI, myself. It is a long way to the 27th August. We need to focus support, not dissipate it.

The high risk strategy, two weeks in to a ten week process (ie early days yet) is to split the vote and loose both regions.

My way, we give the best chance of winning at least $100,000 and we gain a shot at the top prize as well, $250,000, which is more than the risky strategy of going for the two times $100,000 that we would get by winning two regions but not overall.

 

[Sasha]

Hi jace - we're all agonising over this one! That's interesting about all those likers. If 4,000 likers kicked in, we'd be romping home on all fronts.

I've been surprised at how low-key WPI has been about the Vivint contest. I don't know much about Facebook, but can they hit a button and send a message to all those likers to ask them to boost the vote? If so, would someone be willing to email them and suggest it (sorry, I'm wiped)? It seems such a huge untapped resource.

 

[Dolphin]

Although I think there will be a certain number of floating voters ready to switch, I think the real big issue is that most people are simply not voting at all. There are still amazingly few Vivint signatures considering our numbers on the forum. Even if we could persuade everyone on Phoenix Rising who is now voting WPI to switch their vote (and I'm on the fence about wholesale switching this early in), I don't think it will be enough to help. We need more voters!

I agree there needs to be more voters.

I'm sticking to not voting for the National ME/FM Action Network with my family's 3 votes until they get 200 votes in a day. It's better done sooner rather than later as the longer it goes on, the more that it will need to get more than the leading group.

And to be honest, I'm thinking of setting a new target of 250 for 5 (?) days after that i.e. if they're not at 250, I'll be going back to the WPI. The main strategy shouldn't be about getting many hundreds of WPI votes (which probably isn't going to happen anyway, based on what happened in Round 1) - they need to get lots more new votes.

 

[Dolphin]

I don't have any replies back from the IACFS or the Nightingale Foundation, but I've noticed that there wasn't any votes for the IACFS yesterday (usually 3), we will see if that continues. Unfortunately, Nightingale received 8 votes again, this is so unfortunate when we really need them. If anyone has a personal contact with someone there, please call and ask them to switch to the Action Network.

I think most PWC's have become complacent with this contest since, at a glance, WPI looks like a shoe-in and Action Network looks like they have no hope. People are fairly good about voting each day, but no one (with the exception of some on here ) has any desire to go get more votes.

What do you guys think about starting a "Get one more Vote" campaign, put it on all the forums asking that people continue to vote for WPI but go out and "get one more vote" specifically for Canada. We are only behind by 450 - 500 votes per day, I think we have at least that many people logging on to the forums daily and it would be a snap if everyone helped.

Again, we will worry about closing the gap between us later.

FWIW, I think most or possibly all the Nightingale Research Foundation votes are coming from The Hummingbirds' Foundation for M.E., and people who get their [HFME] mailings or are on lists heavily influencd by them.

I have seen no evidence the Nightingale Research Foundation itself is promoting the contest including in Round 1 when it was very tight at the end.

At the start of Round 2, JB of Hummingbirds' Foundation for M.E. found out that Nightingale Research Foundation had qualified for Round 2 and naturally encouraged people to vote for the Nightingale Research Foundation. I don't think it would be easy to change a lot of those voters' minds.

 

[helen41]

apparently there has been a question if vote trading is allowed, and Vivent says they will put something up on their FB page. So frustrating, when I've sent them 2 emails already with no response. Meanwhile, I didn't repost my request on the public forum today. we'll see

 

[Tuha]

now I am also voting with half from my 7 votes for the National ME/FM Action Network. I think today they will get a bit more than 200 votes. But they need at least 7OO - so they are still far away. I will continue to vote for them 3-4 days and if they will not get at least 500 with continuing of growing votes - I will go back to WPI.
a lot of people feel safe with WPI but I wouldnt. That "Journey 4 A Cure Inc" which changed WPI on the 5th place got 600-700 more votes during the last days. if it will happend in WPIs region - WPI can easily lose the first position. Remember, we are really weak community and we will not be able to increase our votes with some hundreds more votes.
Jace, Sasha its also for me still big miracle and also really big disappointment that even for WPI there is a poor support. I thought that at least for WPI the people will wake up and try to do an effort - what we are waiting for? - that the help will fall from the sky? how many patients are voting - 200?, 300? where are the others?
I think in this situation we cannot expect that we will get 1000 votes more - i am not expecting that a lot of new patients will start to vote - the only way which I see - that the patients who already vote will ask more friends to vote regulary. I will have soon a party with my friends so I hope I will get there some friends for this competition - maybe its a good reason to have a party
seriously, I think we will be really happy if 1 organisation will win - I dont see it at all optimistic these numbers. I think we are seriously nowhere. We should start on all ME/ cfs forums/organisations a serious discussion how to continue and to talk about the need of patients support. these numbers give us no hope.