• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

Dolphin

Senior Member
Messages
17,567
(Apologies for being a bit late with this update)

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

Pacific:
Whittemore Peterson Institute: 11583 + 1009 = 12592 (numbers have dipped a little - it was 1117 two days ago)
Be Perfect Foundation: 5651 + 325 = 5976
Conejo Valley Friendship Circle: 5037 + 243 = 5280
Surfers Healing 3484+264 = 3748

Canada:

Light and Love Home- Vancouver 7123+513=7636 (their numbers are going down a little)
Saint John Regional Hospital Foundation 3425+235 = 3660
6th: National ME/FM Action Network 978+105 = 1083
Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.

Pacific:
Whittemore Peterson Institute: 12592 + 1013 = 13605
Be Perfect Foundation: 5976 + 255 = 6231
Conejo Valley Friendship Circle: 5280 + 241 = 5521
Surfers Healing 3748+219 = 3967

Canada:

Light and Love Home- Vancouver 7636 +543=8179 (their numbers are going down a little)
Saint John Regional Hospital Foundation 3660+289 = 3941
6th: National ME/FM Action Network 1083+146 = 1229

That is the best result for the National ME/FM Action Network that I have seen.

It is interesting that the results for some groups in Pacific e.g. Be Perfect Foundation are not as good as they were. Their spirit could have been broken. I haven't gone through all 20 to see whether there are any other groups getting a substantial number of votes.
 

Attachments

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Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks again for providing these figures, Dolphin - I don't suppose you've got them on a spreadsheet that shows them as a time series that you could upload? Now that we're 14 days in I've lost any sense of the fluctuation in numbers for the individual charities. If the Pacific competitors are folding, that's very good news; and if NM/FAM are gaining, similarly but it would be good to see what the Canadian leaders' time pattern is.
 

Dolphin

Senior Member
Messages
17,567
Thanks again for providing these figures, Dolphin - I don't suppose you've got them on a spreadsheet that shows them as a time series that you could upload? Now that we're 14 days in I've lost any sense of the fluctuation in numbers for the individual charities. If the Pacific competitors are folding, that's very good news; and if NM/FAM are gaining, similarly but it would be good to see what the Canadian leaders' time pattern is.
No spreadsheet I'm afraid but people could make up the information from the attachments I have sent (the region results are down below the top 100).

But I would repeat that I think there are not enough "floating voters" (amongst the WPI voters) to bring the National ME/FM Action Network up - they need to be trying to bring in other new voters.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
No spreadsheet I'm afraid but people could make up the information from the attachments I have sent (the region results are down below the top 100).

Fair enough!

Dolphin said:
But I would repeat that I think there are not enough "floating voters" (amongst the WPI voters) to bring the National ME/FM Action Network up - they need to be trying to bring in other new voters.

I agree - on another thread some people were saying they have an initiative coming up that they hope will bring in new voters to the contest to support NM/FAM, which is exactly what needs to happen. They didn't mention timeframe, though.
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
I think its time to hit the National Action Network hard. Heres a little analysis of the current situation, and a possible plan to move forward:

Using Dolphins figures from June26

Angelman Syndrome has 28,537, if we assume that they will continue to get an average of 2,800 per day until the end of the contest, WPI would need to get an average of 3,040 votes per day (in round numbers) starting today just to tie them!! To make it worse, the top 3 charities are really pushing each other competitively, and they are gaining voters at a steady pace. So WPI does not have any real chance of winning the $250,000 IMO.

In the Pacific Region:
Even though Conejo is number 3 currently, they are our biggest threat as they were able to pull together almost 1300 votes in one day. If our worst nightmare comes true and they start voting an average of 1300 per day starting today, it would take (roughly) 32 days for them to catch up to the WPI, assuming that WPI receives an average of 1050 votes per day.

Since they would not catch us for 32 days out of the 62 days remaining in the contest, this gives us a lot of time to re-group if we start supporting the Action Network now.

In the Canadian Region:
Light and Love Vancouver is all over the place but has averaged 629 votes per day so far. The good news is that it is trending below that currently, probably because they feel safe.

National Action Network has been averaging about 92 per day, but is trending up and hit a high of 146 on Sunday. If we add in IACFS and Nightingale, they could be hitting between 155 160 per day right now.
So we need about (629 160) = 469 to tie with Light and Love each day. Then we will also need to close the gap between us.

So heres my idea in 2 phases:

Phase 1 - we work hard at hitting groups in Canada, groups with FM, etc. that are not currently supporting the WPI, to support the Action Network. Also, the floaters on this board can start supporting them as well. We build this group up to the 469 + that is needed.

Then Phase 2 we ask Andrea if later in the contest, when WPI is unequivocally safe, to throw WPI support to the Action Network for some days in order to close the gap. If we can close it with 1000 votes per day for a week or two we would be in business! Doing this later in the contest will give us the advantage of surprise as well less time for them to respond.



I am supporting the Action Network now because I think my vote may make more of a difference there.
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
I agree with SpecialK, and began soliciting votes for ME/FM yesterday. We need to remain vigilant, but with Dolphin's updates, I believe we have plenty of lead time to switch back our 'floating votes' if things change in the Pacific region.
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
I never did get a response back to my 2 emails asking about incentives, but obviously someone did. I saw this posted on the Cherubs site "We are very sorry to have to report to you that Vivint has changed the contest rules and decided to *not* allow raffles or any type of exchange of goods for votes, including raffle tickets. They did this to even out the playing field a bit more and to encourage people to vote just because they believe in the causes. This is beyond our control and we have to abide by the rules". This is the rule I found that they must be referring to "Vivint does not support or condone charities enticing their supporters to vote for them through any other means than their own free will."
I'm so glad I was feeling too sick to go ahead with a sweepstake
 
Messages
59
I agree with SpecialK82 too.
We are actively working to get more votes in Canada. The organizations listed in WIKI are either us or defunct. We have contacted many support groups and now we're working on other groups that might give us a boost. It's hard to get the patient community out as most are afraid of Facebook because of the report of a person losing their disability insurance because of a photo seen on Facebook. Whether the story is true or not, it has people on disability afraid to be seen doing much on facebook. Only 10% of my support group will use it. If we could convince these organization to do something like the Pepsi challenge where you can login via Facebook or directly with an email account we might get more patients voting. Perhaps we could all write vivint and suggest it for next year. Their email is vivintgivesbackproject@vivint.com.
 

Tuha

Senior Member
Messages
638
How jace said - its really easy to have a fictious facebook account - I did the same and I use it for these competitions. Its only a small work to do it. The patients should know that there are every year a lot of facebook competitions - so they will use it regulary. just to be careful to use similar facebook name and email adress - It looks suspicious if your name is for example Smith and your email adress is wallace@hotmail.com
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hi Sasha

I have now forwarded your text, so it will go to Bndnis ME/CFS, Fatigatio e.V. and CFS Aktuell. And i also personally asked them wheter they already promote the contest and told them i think it's a good thing and they should do so. As soon as i hear something back, i will post it here.

Next i will contact that Spanish forum you mentioned and maybe some other Spanish organisations. I will post about their reaction here too.

Eric
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi Sasha

I have now forwarded your text, so it will go to Bndnis ME/CFS, Fatigatio e.V. and CFS Aktuell. And i also personally asked them wheter they already promote the contest and told them i think it's a good thing and they should do so. As soon as i hear something back, i will post it here.

Next i will contact that Spanish forum you mentioned and maybe some other Spanish organisations. I will post about their reaction here too.

Eric

Great stuff, Eric! Thanks for doing that - I hope they give a positive response. :thumbsup:
 

Dolphin

Senior Member
Messages
17,567
Votes from midnight eastern time/10pm Mountain time last night - incl. increase over previous 24 hours.

Pacific:
Whittemore Peterson Institute: 12592 + 1013 = 13605
Be Perfect Foundation: 5976 + 255 = 6231
Conejo Valley Friendship Circle: 5280 + 241 = 5521
Surfers Healing 3748+219 = 3967

Canada:

Light and Love Home- Vancouver 7636 +543=8179 (their numbers are going down a little)
Saint John Regional Hospital Foundation 3660+289 = 3941
6th: National ME/FM Action Network 1083+146 = 1229

That is the best result for the National ME/FM Action Network that I have seen.

It is interesting that the results for some groups in Pacific e.g. Be Perfect Foundation are not as good as they were. Their spirit could have been broken. I haven't gone through all 20 to see whether there are any other groups getting a substantial number of votes.
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
 

Attachments

  • 311h%2058%20mins%20Vivint%20Gives%20Back%20Project    Vivint%20.pdf
    891.7 KB · Views: 15
  • 335h%2058%20mins%20Vivint%20Gives%20Back%20Project    Vivint%20.pdf
    1.1 MB · Views: 17

Dolphin

Senior Member
Messages
17,567
FWIW, I changed my signature

FWIW, I added the National ME/FM Action Network to my signature.

It is slightly awkward for me to switch as I am on a forum where I have an avatar which says, "I vote for the WPI every day". They'll only put up a custom avatar like that if you donate and if you turn it off, it gets deleted.

So I'm going to wait till the National ME/FM Action Network gets some more votes - get over 200 votes in a day and I'll delete that avatar and use our family's three votes for the National ME/FM Action Network at least for that day (depends how things go after that). If you can't get over 200 without me, you basically don't have a chance, while I know currently the WPI votes have some value.

I feel more comfortable about voting for the National ME/FM Action Network because people have done a good job in getting the WPI vote at a consistent 1000 or so per day, so well done to everyone who has done that. Saying that, currently I have little confidence that the WPI will win $250,000 - if that were to change, I might be more willing to continue to vote for the WPI.
 
Messages
59
FWIW, I added the National ME/FM Action Network to my signature.

It is slightly awkward for me to switch as I am on a forum where I have an avatar which says, "I vote for the WPI every day". They'll only put up a custom avatar like that if you donate and if you turn it off, it gets deleted.

Can you consider switch now and not waiting until 200? We'te at 176 now and we really need the votes. Thanks
.

Thanks for adding it to your signature. FYI, I was able to save the image of your profile picture (right click - save picture as). If you do that and remove it from here, you should be able to reload it from the one you saved just as you do any profile picture.
 
Messages
59
You can set up a facebook account without giving away your real identity. This fact ought to reassure those that fear consequences in real life from facebook activity. The first step is to set up a new, dedicated email address via any of the big providers. It is quick, and it is free.

There is no need to upload any information to your facebook account that you don't want to. Your avatar can be a fluffy kitten. You can knock a few years off your age, you can even change gender (all free, and without side-effects).

Believe me I've tried many many times and their mind is just closed to it. I did finally convince one person but it was a hard sell and it's only because it's the National ME/FM Action Network and they want to support it.

I'm going to keep trying - begging, pleading....
 

Dolphin

Senior Member
Messages
17,567
Dolphin said:
FWIW, I added the National ME/FM Action Network to my signature.

It is slightly awkward for me to switch as I am on a forum where I have an avatar which says, "I vote for the WPI every day". They'll only put up a custom avatar like that if you donate and if you turn it off, it gets deleted.

Can you consider switch now and not waiting until 200? We'te at 176 now and we really need the votes. Thanks
Thanks for adding it to your signature. FYI, I was able to save the image of your profile picture (right click - save picture as). If you do that and remove it from here, you should be able to reload it from the one you saved just as you do any profile picture.
Thanks for trying. But it's a different forum. They have 15 (?) built in avatars. They'll upload another avatar for you if you donate. There is no button for somebody to do it themselves. So the problem isn't a technical problem.

At the moment, I'm inclined to leave my avatar on PR as it is (I could change it myself). No avatars exist for encouraging votes for the National ME/FM Action Network anyway that I know of. Even if/when I start voting for the National ME/FM Action Network, I will only feel confident doing that if the WPI vote doesn't decrease too much. So an avatar advertising the contest is better than none it seems to me personally at the moment.

But the avatar on the other forum says "I vote daily for the WPI" which I can't use if I'm not voting daily for them.
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
Wowie - huge numbers in the vote yesterday. Angelman and Team SanFilippo are on fire with 3200 votes each, thank God they are not in our regions of interest :)

Great news for National Action Network, 176 votes! It's a new record, and up from 146 votes the day before!

Thanks Dolphin for the on-going statistics and for changing your signature :D

I am going to encourage a few family members that are facebook holdouts to sign up and start voting Action Network.

I cannot find an email for IACFS/ME - does anyone have contact info? They got 3 votes yesterday.

Nightingale received 8 votes yesterday and I have sent them an email this morning asking them to support Action Network.

CFS info - thanks for trying to get people signed up for facebook - it is so important for this contest, but also for the next Chase contest when Phoenix Rising will be a contender, and again for Vivant next year! With any luck we will find a few more contests along the way, they seem to be getting more popular :thumbsup: