• 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!!

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
Just had another thought:

We need to go out a get some FM people into this contest right now. There are two FM charites - Rocky Mountain CFS/FM and Canada National ME/FM Action Network.

So, this is my thought, have CFS people concentrate on getting at least WPI in as a regional winner. At the same time, the FM folks concentrate on their charity!

Canada looks much easier as has been pointed out, so maybe we only publicize Canada. (it doesn't matter to me, whichever is more popular) But we should pick one and post it all over the FM boards so that we can get $200,000 research money.

Again, I would hate to see a ton more endorsements in Canada region at the moment, but maybe it can't be helped because we need to have FMer's lined up and ready to go on June 12.

I think FMer's may be more inclined to vote for a charity with FM in the name then only CFS - I'm saying this because I wonder how many of them supported CFS in Chase giving, it doesn't seem like too many.

If someone on here has more energy, they may even want to contact one of the FM groups nominated and ask what they would do with the money and then publish that on FM boards along with instructions.

Even if FMer's want to nominate another group and get behind it, that will still work, I'd love to see money go to a pure FM group than anything else!!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi guys - I'm a bit confused now! Who should I be endorsing today? Is it WPI? Should we keep endorsing them til the end or are we still trying to get all our regional charities boosted?

Sorry, I have lost the plot!
 

caledonia

Senior Member
Either Rocky Mountain ME/CFS FM (Mountain) or CFIDS Assoc (Eastern) needs help to get into the top 20. Today I'm going to vote for Rocky Mountain.

WPI (Pacific) is well situated, now in 2nd place above the Prader Willi's. National ME/FM Action Network (Canada) is also good at 5th place. IACFS/ME (Central) has not shown up yet.

We only need to get an org into the top 20 in each region at this stage.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks, Caledonia - I'll endorse Rocky Mountain today.

Once the Chase contest is over (it ends today), should we start a new, high-profile thread for Vivint, telling people in the first post who to endorse when? I think it would be helpful to have links to all the ME/CFS charities we're pushing in that first message so that people can find them easily. Maybe the first message (perhaps it could be an article) could be editable so that as the situation changes, it's easy to see what to do in that first, easy-to-find message.

In case it helps, here are links to all the Vivint pages of the charities that I'm aware we're supporting:

CAA: http://www.vivint.com/givesbackproject/charity/318
Rocky Mountain CFS/ME & FM Association: http://www.vivint.com/givesbackproject/charity/889
WPI: http://www.vivint.com/givesbackproject/charity/769
(Canadian) National ME/FM Action Network: http://www.vivint.com/givesbackproject/charity/855

I couldn't spot one in the Central region. Is there anyone located there we could nominate? I couldn't see anything that says where is considered central.
 

shannah

Senior Member
Messages
1,429
I thought a couple of people nominated IACFS for the central division but I keep checking and it hasn't shown up yet. I wonder if there's a problem.
 

caledonia

Senior Member
I did nominate IACFS/ME two days ago. It's supposed to be up in 24 hours.

Edited to add, I'm now thinking the problem might be that it's international.

I'm going to nominate the Wisconsin ME/CFS Association. Ok, I just got them nominated.

I'm going to vote for Rocky Mountain again today.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
An update:

CAA: #28 in Eastern Region
Rocky Mountain CFS/ME & FM Association: #22 in Mountain Region
WPI: #2 in Pacific Region
(Canadian) National ME/FM Action Network: #5 in Canada Region

It's the top 20 in each region that go through so it's CAA & Rocky Mtn thing that need endorsements at the moment.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I have another loud signature, this time promoting the Vivint contest - please feel free to copy/adapt!


ETA: At least, I can see it in "Settings"... I hope it shows up soon...
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
An update:

CAA: #28 in Eastern Region
Rocky Mountain CFS/ME & FM Association: #22 in Mountain Region
WPI: #2 in Pacific Region
(Canadian) National ME/FM Action Network: #5 in Canada Region

It's the top 20 in each region that go through so it's CAA & Rocky Mtn thing that need endorsements at the moment.

I voted for CAA.
please remind me tomorrow. I tend to forget.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
That's weird - my new signature has turned up in my earlier message (#65) but not these later ones... weird... anyway, it's there to copy for anyone who would like!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I voted for CAA.
please remind me tomorrow. I tend to forget.

Great! I think we should keep bumping the thread at least every day so that when people hit the "what's new" button, they'll see the thread and be reminded.
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
Please vote to get as many CFS orgs into the top 20 in their region as possible. Even if they don't have a chance of winning the top prizes, they will be eligible for a $2500 matching donation from Vivint if they get to Round 2.

This means not just one CFS org per region. After they get into Round 2, then you can decide who you want to focus on for the top prize per region. But let's get as many eligible for the $2500 match first.

Giving than hundreds of people are voting for WPI per day and the extra votes aren't really accomplishing anything at this point, please spread your votes around to the other orgs for Round 1. Also to mention again, don't let the competition know how many voters you got.

Excellent point! :thumbsup:
Maybe we should be strategizing to get more nominations, especially in the weaker areas, where getting into the top 20 is pretty simple at this point. If we need 150 votes to get to the top 20 in the central region, and we can get 5 charities in Pacific or Canada for the same votes, maybe we are smarter to ensure we get more of our charities in so Vivant will match any donations.
Second round, we can decide which region has the best chance of a win.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Do we know where from/how fast Vivint want the donations to come before they will match up to $2,500? I'm thinking that when generous people here on PR and other forums in the past have offered to match donations, it's been hard to get our whole community to donate very much at all, except for the WPI (and even then, it looks like many people are simply not donating). Funds have often not been matched to their maximum levels. As a community we are so broke that "free money" from Chase and Vivint are much better options.

I'm not sanguine at the moment about our ability to get and keep even one ME/CFS organisation in each region's top 20 and so I'm worried about splitting the vote. In the Chase Contest, we absolutely bust a gut to get people to vote via Facebook and it was really hard to get people to do it. And this time, it's daily endorsing and voting so it will be harder to keep people at it, especially those who are not our core supporters. I don't think we'll be able to get friends and family voting daily.

Given what has happened with Chase in the past few days, I'd be more comfortable with a bird/hand/two/bush strategy - I'd suggest choosing a single, strong candidate for each region, and getting them very secure in their top 20 for round 2, bearing in mind that other charities could steam in at the last minutes with lots of support. I think that where $100k is each region's prize, trying to get relatively low amounts of $2,500 available for matching donations that might never be given isn't the best policy.

What do others think?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I still can't spot an ME/CFS charity in the Central region. I hope they're going to let one in!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I don't know if everyone has discovered how to see the rankings - you go here and click on each region's symbol to see the rankings in that region.

It's interesting to see how few votes there are between many of the charities at this stage - a few tens of votes can make a big difference in rankings.
 

charityfundraiser

Senior Member
Messages
140
Location
SF Bay Area
Do we know where from/how fast Vivint want the donations to come before they will match up to $2,500? I'm thinking that when generous people here on PR and other forums in the past have offered to match donations, it's been hard to get our whole community to donate very much at all, except for the WPI (and even then, it looks like many people are simply not donating). Funds have often not been matched to their maximum levels. As a community we are so broke that "free money" from Chase and Vivint are much better options.

I'm not sanguine at the moment about our ability to get and keep even one ME/CFS organisation in each region's top 20 and so I'm worried about splitting the vote. In the Chase Contest, we absolutely bust a gut to get people to vote via Facebook and it was really hard to get people to do it. And this time, it's daily endorsing and voting so it will be harder to keep people at it, especially those who are not our core supporters. I don't think we'll be able to get friends and family voting daily.

Given what has happened with Chase in the past few days, I'd be more comfortable with a bird/hand/two/bush strategy - I'd suggest choosing a single, strong candidate for each region, and getting them very secure in their top 20 for round 2, bearing in mind that other charities could steam in at the last minutes with lots of support. I think that where $100k is each region's prize, trying to get relatively low amounts of $2,500 available for matching donations that might never be given isn't the best policy.

What do others think?

The CAA had an awareness day match last year where a donor offered to match $10,000. They exceeded that amount in 12 days. Round 2 in Vivint lasts 75 days and the match is for $2500.

I check the numbers daily and it looks to me like there are about 200-300 people still voting for WPI every day, which is now in #1 spot for Pacific. Some of the other charities like CAA only needed about 30 more votes to get in the top 20 before but now need about 100. That difference accumulated over many days. I understand many people don't support the CAA but for those who see the benefit of them getting a matching grant, it would be quite easy to push them up to the top 20 over the next 2 weeks. In any case, it won't hurt the WPI if there are other CFS charities in Round 2. You all are still going to vote for WPI in Round 2 and no other CFS charity is going to come close in the number of votes. It won't hurt to have other charities in Round 2 even if not a single person donates for the match to any other charities we get into Round 2. In fact, you would then have fewer non-CFS competitors for the WPI.

The #20 in each region currently has this number of votes:
Pacific 75
Mountain 148
Central 150
Eastern 253
Canada 2

C'mon at least don't tell me we can't get 2 votes over 2 weeks for some charities in Canada. If the 300 people currently still voting for the WPI voted for another charity in the 5 regions, we could get another charity in each of the top 20 in each region in just 2 days.

P.S. The WPI and ME/FM Action Network are extremely secure, beyond secure in the top 20 in their regions. It is pretty much impossible for the WPI to not be in the top 20 even if not another vote is cast for them in Round 1. Not to mention we can check the tallies every second so if anyone is falling down to 20 we can immediately change votes. Rocky Mountain still needs a little help. CAA needs a little more help.
 

caledonia

Senior Member
I think we need more choice in Eastern region because CAA is dropping (ie people not supporting it). I nominated Vermont CFIDS Association.

Can somebody also nominate PANDORA? http://www.pandoranet.info I tried but it didn't seem to work - maybe I can only nominate one per day?

I would like to know where these 200-300 people voting for WPI every day are coming from and why they don't understand the contest. There's no point in any more votes now - they're well situated in the top 20 and we're tipping our hand...

I am voting for Rocky Mountain today. They're 18th, so can use a little more help to get more firmly in the top 20.

I think when the real voting happens we should vote for WPI, and Canada.
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
I nominated the Nightingale Foundation in Canada today as well. My hope is, if we keep a daily watch on the numbers, we can respond quickly if any one region is at risk. I still question the opportunity cost of trying to get anyone in the top 20 in the Central region anyway. A worthy charity, yes, but if it would take 153 votes to get to 20th spot as of today, maybe we should focus our votes to an area where we have a better chance of success

I edited this because I got it backwards, forgetting which charity came from which area. I think I've progressed from brain fog to brain fuzz. I meant to question whether we would be able to move a charity into the top 20 in the central region, not Eastern, where we have a good start with CAA