- Messages
- 59
There is also PANDORA in the eastern region looking for votes. http://www.vivint.com/givesbackproject/charity/868
-
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Another Contest Vivant - to WIN Reseach Money!!
- Thread starter SpecialK82
- Start date
SpecialK82
Ohio, USA
- Messages
- 993
- Location
- Ohio, USA
IACFS/ME was just 8 away from 20th position when I voted for them a couple hours ago. The competition is getting more serious now, and will probably get a little crazy here as Round 1 finishes.
The Eastern region is hugely competitive pushing the CAA out 400 votes this morning! I really want the CAA to be in the running for the donations but I voted IACFS/ME because they are so close to making it. PANDORA, unfortunately, is still under 50th place.
The Eastern region is hugely competitive pushing the CAA out 400 votes this morning! I really want the CAA to be in the running for the donations but I voted IACFS/ME because they are so close to making it. PANDORA, unfortunately, is still under 50th place.
I think it makes sense to stick with the one nearest to making it (IACFS/ME, I guess) until they are safe (if they ever are) before turning to others.
Strategy! It's horrible! I wish it was just a national, first-past-the-post thing with just one charity for us to support!
frenchtulip
Senior Member
- Messages
- 760
IACFS/ME is now in 19th position!
I have been amazed by the no. of votes for Prader-Willi and a sister illness, Angelman Syndrome. Last year Prader-Willi in Utah won the top prize, and Prader-Willi in CA was the Pacific regional winner. This year:
Prader-Willi in Pacific Region--4th place--1,404
Prader-Willi in Mountain Region--8,240
Prader-Willi in Canada--1st place--1,523
Angelman Syndrome in Central region--1st place--6,571
9th place 543
Prader-Willi is a rare syndrome that affects one in 16,000 to 25,000 in this country.
Angelman Syndrome has been estimated to affect one in 10,000 to 20,000.
I did not check other groups in the top 20 listings that may be connected with these two rare illnesses but do not have Prader-Willi or Angelman Syndrome in their names.
But, boy, these two rare illnesses have amassed quite a number of votes--close to 18,500 votes (if I added correctly). All I can figure (assuming everything is legit) is that their supporters may have started voting in April and voted religiously every day.
I have been amazed by the no. of votes for Prader-Willi and a sister illness, Angelman Syndrome. Last year Prader-Willi in Utah won the top prize, and Prader-Willi in CA was the Pacific regional winner. This year:
Prader-Willi in Pacific Region--4th place--1,404
Prader-Willi in Mountain Region--8,240
Prader-Willi in Canada--1st place--1,523
Angelman Syndrome in Central region--1st place--6,571
9th place 543
Prader-Willi is a rare syndrome that affects one in 16,000 to 25,000 in this country.
Angelman Syndrome has been estimated to affect one in 10,000 to 20,000.
I did not check other groups in the top 20 listings that may be connected with these two rare illnesses but do not have Prader-Willi or Angelman Syndrome in their names.
But, boy, these two rare illnesses have amassed quite a number of votes--close to 18,500 votes (if I added correctly). All I can figure (assuming everything is legit) is that their supporters may have started voting in April and voted religiously every day.
- Messages
- 59
It makes me wonder if it isn't time for some of these charities to merge into one strong National Organization with regional divisions. It would give us a stronger voice and more visibility and make voting in these charities much easier - no vote splitting.
Excellent! I think we should keep voting for them for a while to make sure they don't get overtaken.
frenchtulip said:
Me too - first thing I did was look up its prevalence on Wikipedia and as you say, it's much, much rarer than ME yet they're racking up all those votes. They're the ones to watch for.
One of the reasons I'm voting for the CAA is that this is to do with matching donations as I think the CAA would have a good chance of getting $2,500 in matching donations.
But I don't see it the end of the world voting for the IACFS/ME as one can't be sure whether some might come up from the bottom. What I do think is a waste is voting for the WPI. They have 3213 votes now and 21st has 168. I think it is safe for people to not vote for them for a few days anyway - people can still keeping watching the other ones. I can't see 20 different groups from the region overtaking them before the end of June 11th.
But I don't see it the end of the world voting for the IACFS/ME as one can't be sure whether some might come up from the bottom. What I do think is a waste is voting for the WPI. They have 3213 votes now and 21st has 168. I think it is safe for people to not vote for them for a few days anyway - people can still keeping watching the other ones. I can't see 20 different groups from the region overtaking them before the end of June 11th.
If the CAA doesn't catch your fancy, one could easily be king-maker with the:
Nightingale Research Foundation http://www.vivint.com/givesbackproject/charity/1129 who have 2 votes in Canada where the cut-off is ... 6!
Nightingale Research Foundation http://www.vivint.com/givesbackproject/charity/1129 who have 2 votes in Canada where the cut-off is ... 6!
King-maker! I like it! With 10 voting days to go, any one of us could be that king-maker. All so very "Lord of the Rings"! I guess that makes us Frodo?
caledonia
Senior Member
- Messages
- 4,610
I voted for IACFS/ME today to give it a little more insurance.
helen41
Senior Member
- Messages
- 567
- Location
- Sleepy Hollow Canada
those 2 votes came from my house. I emailed Nightingale as well to let them know the potential. I have no idea what kind of donations, if any, they get, but I figured they could just take over with the office staff and get in if they choose.
I sent a second email to vivint, asking if we are allowed to use incentives to gather votes. no answer yet, but I do know other charities are doing so, and did so last year. I hope there will be a response.
*GG*
senior member
- Messages
- 6,389
- Location
- Concord, NH
20th position in each of these regions in now, 22.5 hours ago and 47.5 hours ago (i.e. approx. 1 day and 2 days ago):
Pacific: 137-153-188
Whittemore Peterson Institute 2641-2966-3267
Mountain: 223-225-268
The Rocky Mountain CFS/ME & FM Association 223 (20th)-225-231
Central: 227-253-309 (went up partly because of IACFS/ME - otherwise would be 279 - another jump of 26)
IACFS/ME International Association for Chronic Fatigue 113-213-309
Eastern: 518-628-820
The CFIDS Association of America 413-444-479
Canada: 3-5-6
National ME/FM Action Network: 172-178-188
Nightingale Research Foundation: N/A-N/A-2
Pacific: 137-153-188
Whittemore Peterson Institute 2641-2966-3267
Mountain: 223-225-268
The Rocky Mountain CFS/ME & FM Association 223 (20th)-225-231
Central: 227-253-309 (went up partly because of IACFS/ME - otherwise would be 279 - another jump of 26)
IACFS/ME International Association for Chronic Fatigue 113-213-309
Eastern: 518-628-820
The CFIDS Association of America 413-444-479
Canada: 3-5-6
National ME/FM Action Network: 172-178-188
Nightingale Research Foundation: N/A-N/A-2
Francelle
Senior Member
- Messages
- 444
- Location
- Victoria, Australia
Just a heads up that the runner up in the Pacific Region to the WPI is getting closer each day or doesn't it matter in this round? Can't remember the guidelines about that - sorry and I'm too brain tired to check the rules! 
Also I have been unable to vote for more than one charity per day as I seem to be locked out once I vote for my choice in one region. Today I can't even vote for one so far but I will keep trying.
Also I have been unable to vote for more than one charity per day as I seem to be locked out once I vote for my choice in one region. Today I can't even vote for one so far but I will keep trying.
Just a heads up that the runner up in the Pacific Region to the WPI is getting closer each day or doesn't it matter in this round? Can't remember the guidelines about that - sorry and I'm too brain tired to check the rules!
Also I have been unable to vote for more than one charity per day as I seem to be locked out once I vote for my choice in one region. Today I can't even vote for one so far but I will keep trying.
Hi Francelle - as long as WPI is in the top 20 in its region by June 11 it's fine. There's no money to be won in Round 1 - it's just about qualifying for Round 2 (where all that matters is to be top!).
Francelle
Senior Member
- Messages
- 444
- Location
- Victoria, Australia
Does that mean there will be one winner for each region in Round 2 or only one overall winner regardless of region?
By the way, there's a great article on CFS by Llewellyn King and I tried to leave a comment mentioning the Vivint contest with a link to Cort's article but the page is hanging for me. If anyone else could do that it would be great - there's only one comment up there now and I expect it's the earliest comments that get the most viewers.
Here's the link to Cort's page: http://forums.phoenixrising.me/show...h-II-The-1.25-million-Vivint-Facebook-Contest
Here's the article: http://www.realclearscience.com/art...fatigue_syndrome_is_misunderstood_106242.html
I think every time a commentable ME article comes up on the web (on CFS central, Dr Jamie's blog, anything) we should be getting in there quick with a comment about Vivint. I think it's ideal recruitment ground.
ETA: Here's what I tried to post - it's not hanging any more but keeps giving me an error message, argh: Please feel free to copy/ adapt. Just one or two mentions ought to do it, no need to hijack his thread.
Thank you, Mr King, for your superb article. It really tells it like it is.
We desperately need research funding and I urge anyone reading this to find out about the Vivint charitable giving contest, in which the Whittemore Peterson Institute is a strong contender to win $250,000 if enough people vote for it on Facebook.
A big effort is being coordinated internationally to support the WPI in this and every vote will count. The main phase of the contest begins on 14 June and daily voting continues for 11 weeks. It's worth opening a Facebook account just for this purpose.
No-one else is helping us - we must help ourselves! Please everyone, join in. Here's the link:
http://forums.phoenixrising.me/cont...Round-II-1.25-million-Vivint-Facebook-Contest
Here's the link to Cort's page: http://forums.phoenixrising.me/show...h-II-The-1.25-million-Vivint-Facebook-Contest
Here's the article: http://www.realclearscience.com/art...fatigue_syndrome_is_misunderstood_106242.html
I think every time a commentable ME article comes up on the web (on CFS central, Dr Jamie's blog, anything) we should be getting in there quick with a comment about Vivint. I think it's ideal recruitment ground.
ETA: Here's what I tried to post - it's not hanging any more but keeps giving me an error message, argh: Please feel free to copy/ adapt. Just one or two mentions ought to do it, no need to hijack his thread.
Thank you, Mr King, for your superb article. It really tells it like it is.
We desperately need research funding and I urge anyone reading this to find out about the Vivint charitable giving contest, in which the Whittemore Peterson Institute is a strong contender to win $250,000 if enough people vote for it on Facebook.
A big effort is being coordinated internationally to support the WPI in this and every vote will count. The main phase of the contest begins on 14 June and daily voting continues for 11 weeks. It's worth opening a Facebook account just for this purpose.
No-one else is helping us - we must help ourselves! Please everyone, join in. Here's the link:
http://forums.phoenixrising.me/cont...Round-II-1.25-million-Vivint-Facebook-Contest
I've just followed my own advice and posted about Vivint on CFS Central. Mindy has a good post on there today: http://www.cfscentral.com/2011/06/steven-salzbergs-pseudoscience.html
ETA: And Dr Jamie's blog, just done that. Here's her new post: http://treatingxmrv.blogspot.com/2011/06/motivation.html
ETA #2: And Patient Advocate. Here he is: http://cfspatientadvocate.blogspot.com/