Power to the patients! Vote Dec 3-12 for a new Biobank for the Vancouver Clinic

December 1, 2012

by Kati and the Phoenix Rising Team

The Vancouver Chronic Diseases Clinic is set to open within the next few months. What better way to support this worthwhile project than to help it win some serious money from a charitable voting contest? With your help and support, we’re getting organized to do just that! Although the Aviva Community Fund is a Canadian contest for Canadian projects, people from all over the world are eligible to vote. This is where your help is needed! Details on how you can help can be found further down the page, but first, some background information on the project…

A Patient Initiative

A few months ago someone pointed this voting contest out to me, but I had a hard time trying to find a project that would be both helpful for patients while also meeting the entry criteria. However, with Dr Alison Bested taking up the position of Medical Director at The Vancouver Chronic Diseases Clinic, the project to fund the clinic’s most needed item came to mind and an idea was born. Since then, patient involvement has been amazing, including all of you who have spent many hours recruiting voters, voting and also creating videos (such as the ones created by “ME Awareness: Words and Pictures”). Thanks to each and every one of you! But, we’re not done yet ;-), we need to bring it home!

BC Women’s Foundation Steps in

While this project started as a patient initiative, the BC Women’s Foundation have also stepped up to the plate by creating a video for our project. Along with Dr Bested, they provided help with the budget and input about where the funds are needed most. They will also recruit more voters from their own network. The video, presented by Dr Bested, is featured front and center on our Aviva page.

The Project

The idea is to fund freezers for patient samples, including everything needed to process them in the standard way (i.e labelling, spinning and tracking). This equipment will benefit ME, Fibromyalgia and Lyme disease patients admitted to the clinic. Our original idea was to fund the cost of exercise testing equipment (and it is still a very good idea), but when Dr Bested and the BC Women’s Foundation started adding up the cost of both projects, the total had passed over $300,000. Each Aviva project in the “big budget” category cannot be more than $150 000, so we put together a bold project which asks for a total of $146,100 in funding.

The Time-line

10 days, 10 votes, 10 clicks - $150k

Aviva held 3 qualifying rounds, each over the course of 2 weeks. The first 10 projects in each budget size category (small, medium and large) moved on to the semi-finals. By the seat of our pants we have successfully made it through the first round. The competition was intense, but the support we received from all around the world enabled us to place amongst the first round qualifiers.

The Semi-finals are the last chance for the community to help out. We need to qualify for the finals, where our project will be judged and ranked amongst the other projects that make it through. Out of 30 semi-finalists in each budget size category, only 10 will be moving to the finals.

The voting period is from December 3rd to December 12th 2012, beginning at 12/noon Eastern Standard Time (Toronto or New York time). By registering to vote in the Aviva contest, you will be given 15 votes in total. You can vote for our project once per day during the voting period. This will require 10 of your 15 votes.

Everyone around the world can voteHow to Help?

The competition in this last round will be fierce and we will need, at a minimum, 1500 – 2000 votes per day to have a hope of winning. Beyond voting personally, you can help us achieve the votes we need by:-

- asking 5 people right now if they will vote daily starting on Monday

- asking these 5 people if they could get one more person each

- asking if they would like to be reminded daily (you can either connect them to the reminder here  or alternatively, you could set your own reminder each day)

Historically, the voting in these contests has always decreased during the weekends, across all charities – these will be the days where we can gain ground, so please double your efforts on the weekends to ensure that our vote count stays up!

How To Vote?

Some of you may have had trouble voting in the last round. Patients with our diseases suffer from cognitive dysfunction and we are aware of this.  To help you get voting, here are a few aids in the form of reminders and detailed instructions on how to vote in the contest.

Where to vote: Aviva site
Facebook page
You can join this event on Facebook to get daily reminders to vote.

Video explaining how to register and how to vote:

(With thanks to ME Awareness: Words and Pictures)

And finally, you can read written instructions from this flyer:

Aviva voting instructions

 

Why Should You Help Your Fellow Canadians?

  • Because a new clinic researching and treating ME, FM and Lyme disease will benefit patients worldwide. It means one more researching team. It sets a precedent for other physicians and for other provinces. Canada needs to step in when it comes to researching the Complex Chronic Diseases that have been neglected for far too long.
  • Voting is free and very safe – Aviva will not send you undesired emails.
  • Voting is also very quick and has the potential to do something very good.
  • By building a strong community, we can help each other by voting in funding contests as well as participating in other campaigns when the need arises.
111 comments

{ 111 comments… read them below or add one }

Kati December 1, 2012 at 7:14 pm

I have noticed a mistake in making my own ad…

To find our project quickly, google ACF13624

Many thanks to everyone for participating and voting forthis important project!

Ember December 1, 2012 at 7:33 pm
Kati

To find our project quickly, google ACF13624

Or follow this link.

Sasha December 2, 2012 at 5:51 am

I'll be voting in this!

I wish it was clear in the contest banner what the benefits for Phoenix Rising members are, because they're big ones – it's a project to get a biobank for blood and tissue (?) samples from ME/CFS, fibro and Lyme patients that will be used by that clinic for research that could benefit us all. Would it be possible to put something like that in your first paragraph in case people don't read down?

When I first saw mention of that project, I thought it was to get medical equipment for a treatment clinic in Canada that had a name that might not be to do with ME. The projects that get my commitment tend to be fundraisers for research projects that will benefit all ME patients. I hadn't actually realised that this was one until I saw 'biobank' in your title! I'd never heard of the Vancouver Clinic (not surprisingly because it hasn't even opened yet) so it wasn't on my radar as a research group.

I think we need to flag up more clearly what this project is, because it deserves our support.

Thanks for writing this, Kati and the team, and for pushing it over the last weeks – this is well worth doing!

RUkiddingME December 3, 2012 at 9:50 am

Kati I can not praise you enough for your advocacy and all the hard work you put in in making our cause known. You are truely an outstanding individual getting all this done on top of dealing with your illness. Kudos to you!!!

Nielk December 3, 2012 at 11:03 am

Voting just started.

madietodd December 3, 2012 at 11:45 am

It really helps me when this information shows up on PR on the first day of voting. If it comes ahead of time, I've stopped reading the thread by the time voting happens.

Honestly? If it's vetted by you guys, I'll vote for it. I haven't got the mental capacity at the moment to sift through worthy candidates.

Thanks for all your work.

Sasha December 3, 2012 at 11:49 am
SpecialK82 December 3, 2012 at 12:11 pm

And we are off and running – after an hour into the contest we are in 17th place, lol.

Stukindawski December 3, 2012 at 12:49 pm

It's possible that yesterday's rank figure is actually the alphabetically order.

Possible.

I just voted anyway :)

maryb December 3, 2012 at 1:28 pm

Vote done , get going folks it only takes a few minutes.

Clodomir December 3, 2012 at 2:35 pm
waiting December 3, 2012 at 5:10 pm
SickOfSickness December 3, 2012 at 5:54 pm

Very easy to do if you link your Facebook account. Just a few clicks.

Purple December 3, 2012 at 6:07 pm

Power to the patients – don't hold back the mouse clicking – we can click our way to thousands of dollars!

Aileen December 3, 2012 at 6:08 pm

We've currently slipped back to 15th place. We are 87 votes behind 10th place. We need to place in the top 10 in our category. If we do, we are guaranteed $5,000 no matter how we do in the finals!

Hope123 December 3, 2012 at 9:53 pm

Hope everyone votes. For people in the US or outside Canada, remember that it doesn't matter where medical breakthroughs occur. Science is international and successful ideas do make it across borders and countries. So here is a chance to raise $$$ for a good cause for free.

Voting contests have netted more than $250,000 now for ME/CFS charities over the last 3 years so it's effective.

GcMAF Australia December 3, 2012 at 10:30 pm

I have voted

Purple December 3, 2012 at 10:43 pm
Hope123

Hope everyone votes. For people in the US or outside Canada, remember that it doesn't matter where medical breakthroughs occur. Science is international and successful ideas do make it across borders and countries. So here is a chance to raise $$$ for a good cause for free.

Voting contests have netted more than $250,000 now for ME/CFS charities over the last 3 years so it's effective.

nearly $370,000 so far and around the world :) United States, Canada, United Kingdom, Australia.

This current contest is very important because the grant being sought in this contest is for research to be carried by an experienced and long term ME/CFS doctor who knows the illness well. So the grant would be potentially of great benefit to everyone around the world and could help bring about greater understanding of the illness.

Please vote daily [I would insert a smiley of puppy eyes here but don't see one]

Little Bluestem December 4, 2012 at 12:16 am

Well, I'm not off to a very good start. When it was past midnight last night, and thus Dec. 3rd, I checked the Aviva site and saw that the contest did not start until noon Eastern Standard Time. I had a very busy afternoon and fell asleep when I got home. :sleep: I did not wake up until 10:30 Central Standard Time. Now that I am registered, I have missed the first day of voting. :oops:

IIRC, the e-mail address and password for registration confused someone in another contest. They are not asking for the password to the e-mail account you use to register. They want a password you will use to sign in to vote.

GcMAF Australia December 4, 2012 at 12:18 am

Well i tried to vote and it was the day before here due to the international date line

Ember December 4, 2012 at 12:30 am
Mark

The competition in this last round will be fierce and we will need, at a minimum, 1500 – 2000 votes per day to have a hope of winning. Beyond voting personally, you can help us achieve the votes we need by:-

- asking 5 people right now if they will vote daily starting on Monday

- asking these 5 people if they could get one more person each

We fell short on the first day. By asking others for help (and we need it), we encourage them to watch Dr. Bested's video. The consciousness-raising itself brings a benefit.

Little Bluestem December 4, 2012 at 12:34 am

Oh no! I just found this on the Aviva Community Fund website.

Who can vote?
Anyone in Canada who is registered on the Aviva Community Fund website can vote for ideas during the Idea Entry and Semi-Final phases of the competition.

It looks to me like only Canadians can vote in this Semi-Finals.

GcMAF Australia December 4, 2012 at 12:47 am
Little Bluestem

Oh no! I just found this and the Aviva Community Fund website.

It looks to me like only Canadians can vote in this Semi-Finals.

well i voted from australia
hmm

ggingues December 4, 2012 at 1:02 am

1070 votes.

GG

Kati December 4, 2012 at 1:28 am

Everyone can vote from all around the world. i have personally asked.

please vote from all around the planet. We need everyone!

I will spend more time oer here becaue I have been kicked out from FB for "spamming". It's so unfair, I am promoting the contest!

Please share with your networks. ontinue to vote, do not give up until it's over. Last round some teams lost a lot of votes for illegal voting. We don't know when and if other teams will gove up. What I know is we have strength that other teams don't, the fact that we have international votes.

I have emailed all of the members of the legislature today. – I hope it helps.

View attachment 4220

justinreilly December 4, 2012 at 1:34 am

I assume they will throw out all votes coming from IP addresses outside Canada.

Kati, do you know anything about this?

justinreilly December 4, 2012 at 1:37 am

Thanks, Kati, we cross posted. Maybe you can edit the article to add this info and to also add that we get $5K minimum for being in top 10 and getting to finals.

Sasha December 4, 2012 at 2:18 am
justinreilly

I assume they will throw out all votes coming from IP addresses outside Canada.

Kati, do you know anything about this?

I voted from the UK and it registered my vote so there's certainly no auto-block. Kati says she's asked them and they've said anyone in the world can vote, so let's keep voting!

Kati December 4, 2012 at 3:02 am

We are currently 11th. In the competition. Keep on voting! :-)

View attachment 4221

Sasha December 4, 2012 at 3:04 am

Just noticed your avatar, Kati – clever!

Nielk December 4, 2012 at 7:07 am
Anne December 4, 2012 at 11:34 am

We're currently in #15, but top 10 is within reach, and as Kati says, it ain't over 'til it's over (some projects can get disqualified for various reasons, so it may not be over even if we finish, say, 11th). But let's get friends and family going so that we move up into top 10!

Kati, so unfair with FB, how long will they keep you off? Can you create another account?

Posting my version of the voting instructions here, my friends seem to need detailed instructions, otherwise they get stuck and give up:

Here are instructions on how to vote. It's easy to do it via Facebook, but one can also vote via the Aviva website, so please spread the word to everyone you know – they don't need to have Facebook accounts!

1) Open this link (or google “ACF13624”):
http://www.avivacommunityfund.org/ideas/acf13624

On the first day: Register on the Aviva website (this step you only do once). You can register and vote via your Facebook account, OR via your e-mail this way: Click on “Register” at the top right of the screen. Fill in your e-mail address, choose a password, click “Register”. You will receive a confirmation e-mail with a link to complete your registration (if it doesn’t appear, check your Spam folder or wait a while, it may take some time).

3) Navigate to the Complex Chronic Diseases Clinic entry by opening this link:
http://www.avivacommunityfund.org/ideas/acf13624
(or google: ACF13624)

4) Click on “Sign in” at the top right of the screen. After signing in, you should be on the Complex Chronic Diseases Clinic page on the Aviva website (if not, use the link above). Find the blue “Vote now” button and click Vote. There will be a message confirming your vote and the button will turn grey.

5) Vote again tomorrow! Then go directly to
http://www.avivacommunityfund.org/ideas/acf13624

Sign in and click “Vote”. Please vote every day for 10 days. The last day is Dec 12th. If our project is in the top 10 at that point, it will receive at least $5,000 and could win $150,000 in the judged finals. That’s a lot of much needed money for biomedical ME/CFS research!

Last time only around 30 votes differed between #11 and #10, so every vote matters.

frenchtulip December 4, 2012 at 1:26 pm

We're gaining! Thanks to everyone who has been voting! The project is now only 172 votes away from 10th place (winning position to get into the finals)!

Hope123 December 4, 2012 at 2:19 pm

Keep it up everyone. Voting from the US here and it registered my vote.

When I voted last night, we were at "850" now it's up to "1735" so we gained a TON of votes overnight! And we won an "e-badge" for being one of the top 5 charities in the whole contest making the greatest gain in a day! Total # supporters
is 2,788.

Little Bluestem December 4, 2012 at 11:00 pm

I have been sitting here reading other threads and waiting for my slow dial-up connection to load the Aviva contest page. It was ticking toward midnight so I was scrolling up and down looking for the sign-in button when I realized my 'dashboard' was showing. I looked at the very top and saw that I was signed-in. It must have signed me in automatically, unless I didn't sign out yesterday and they didn't automatically sign me out. I'll see what happens tomorrow.

ETA: 2101 votes, 2027 supporters. Why are there fewer votes than supporters? o_O We need to get a loyalty badge!

Purple December 4, 2012 at 11:06 pm

Day 3 voting just started, on about 2100 votes and with our project in the 14th place (where it has been for the last few hours). Please vote – it's just clicking the mouse!

Little Bluestem

I looked at the very top and saw that I was signed-in. It must have signed me in automatically, unless I didn't sign out yesterday and they didn't automatically sign me out. I'll see what happens tomorrow.

You stay signed in, unless you sign out. So you can stay signed in for the duration of the voting period, to save a little time each day.

maryb December 5, 2012 at 4:14 am

Come on folks we're only 2oth we can do better than that……………

Sasha December 5, 2012 at 6:35 am

Did this morning's vote – can see the number of supporters is going up all the time!

Aileen December 5, 2012 at 10:08 am

We are still stuck around 15th position. We need to be in the top 10 to make the finals and are guaranteed at least $5,000 if we do.
People have been complaining bitterly about the lack of biomedical research, about all the psychobabble spread by certain parties and the harm that has and still is causing. Here is your chance to get some biomedical research off the ground in Canada – where there has been almost nothing!

An experienced ME/FM/MCS doctor is heading this. Dr. Bested is a hematologist (blood specialist) and very knowledgeable about natural therapies too – best of both worlds. She needs special equipment to properly process, track and store patient samples for research. Without this equipment, research cannot begin. We want it to start as soon as the clinic opens!

You can keep on complaining, which will accomplish nothing. Or, you can take 2 minutes of your time for the next 8 days and cast a vote. It costs you nothing but we will all reap rewards from research.

Anyone anywhere in the world can vote. If you don't vote, don't complain that there is no research!!
http://www.avivacommunityfund.org/ideas/acf13624

If you need detailed step-by-step voting instructions, see this post:
http://forums.phoenixrising.me/index.php?threads/aviva-contest-semi-finals-for-150-000.20742/page-2 (post #30)

waiting December 5, 2012 at 10:50 am
Anne December 5, 2012 at 11:28 am

I agree, Aileen. Come on folks! And please make sure friends and family are voting too.

Detailed instructions can also be found in my post above.

Right now it seems we are getting a little closer to top 10 – so we just need to keep voting and encouraging others in all the ways we can.

Hope123 December 5, 2012 at 6:04 pm

It's probably too late but is there any chance of having the charity entered also under the "at-risk" youth category? It seems like if you're in that category you get extra chances to win money.

The reason why I think the charity could qualified is because Aviva defines 'at risk' as

"This year, Aviva is awarding up to $150,000 to ideas that support our Street-to-School initiative, which aims to help vulnerable young people who are at risk of being exposed to violence, sexual abuse, drug addiction, prostitution, health issues, a lack of education or fewer career options."

(http://www.avivacommunityfund.org/about/at-risk-youth)

Certainly young people with ME/CFS have health issues and because of that they are at risk for "lack of education" (miss out on school, can't do all activities, etc.) and, down the line, "fewer career options." A UK study by the Tymes trust showed that ME/CFS is the #1 cause of long-term school absence from health issues in the K-12 group. And there are economic studies estimating that kids who have chronic illnesses feel the impact on their careers/ education for the rest of their lives even after they get better due to prime years lost. There's an economic paper on ME/CFS commenting on this too. Anyhow, if we can't do it this time, consider for next time.

Aileen December 5, 2012 at 6:39 pm

Currently in 12th place, just 39 votes out of 11th. Let's get there in the next couple hours!

ggingues December 5, 2012 at 11:25 pm

Voted.

3237

GG

waiting December 5, 2012 at 11:37 pm

Done. 3263

Aileen December 6, 2012 at 12:02 am

Bad news folks. We received 105 fewer votes Day 3 (just ended) than Day 2. :cry:
What is it going to take to get people to vote??
Thank you to everyone who is.
Details in the attached pdf

ggingues December 6, 2012 at 12:50 am
Aileen

Bad news folks. We received 105 fewer votes Day 3 (just ended) than Day 2. :cry:
What is it going to take to get people to vote??
Thank you to everyone who is.
Details in the attached pdf

Electrotherapy?:thumbdown:

GG

Ember December 6, 2012 at 1:32 am
Aileen

What is it going to take to get people to vote??

Negative ads?

Aileen December 6, 2012 at 2:03 am

Cute ad. It just gave me an idea. How about this? We could offer the services (non-voluntary basis) of one Dr. Weasel for your very own private therapy session if you don't vote! That should get the votes pouring in. :devil: Just might find a way to put the guy to good use after all. :lol:

Sasha December 6, 2012 at 3:40 am

Just voted.

We're 13th!

We just need to get into 10th place to have the same chance as everybody else of getting the $150k – Aviva chooses the winner from the top ten.

snowathlete December 6, 2012 at 9:16 am

Just voted!
uh….cant remember the number…I suppose that's why we need money for research!

Tuha December 6, 2012 at 9:29 am

I chcecked the results of the best 20 organisations in our category. Just be carefull because sometimes it doesnt show the good numbers. I chcecked it in the time when americans start to wake up slowly (around 6 a.m.) so it means that during the day we will a bit lose our position because we have a lot of european and australian voters. here are the results:

1. Riehl skate park – 5678
2. Undercurrent Youth Centre – 5536
3. Une vraie cour d'école pour ados! – 5463
4. Fighting for Healthy, Affordable Food in North End Halifax – 5120
5. Exoskeleton for Trevor Greene, Canadian Veteran – 4779

6. Nouveau gymnase pour notre club de gymnastique Les Hirondelles – 4482
7. Stay Strong Nick Roma 4462
8. Harder-4-Carter: The Carter Antila Memorial SkatePark – 4210
9. Non-profit Companion Animal Hospital & Shelter – 3876
10. Castle Park's "Play for ALL", universally accessible playground – 3767

11. Un préau pour L'École des Enfants-de-la-Terre – 3557
12. Medical equipment for a new chronic diseases clinic in Vancouver – 3520
13. Projet Paradis / Paradis Project – 3492
14. The Power of Play – A Barrier Free Playground – 3329
15. Sensory Therapy Room for kids at Lutherwood – 3025

16. Building Change -A New Shelter for the RCSPCA – 2951
17. Vera M. Welsh & community of Lac La Biche needs a new playground – 2937
18. Sports for all 2902
19. Valley Park Go Green Cricket Field Project – Let There Be Lights – 2883
20. Volunteering to Independence Program "the Katimavik VIP program" – 2718

I would do a small analyse. Our results are not pesimistic but also not optimistic. We are only 250 votes behind the 10 th place but also other organisations are not far away from us. if you look at other organisations there are a lot of kids organisations and how we could already see it – the kids are able to bring thousands of votes in the last day. so we should try to catch at least 7-8 position and the gap is already around 900 votes. it´s not a lot but we have to do something now to change it because every day it will be more difficult. We already did a lot of commercial and we can continue but it doesnt bring us significant number of new voters. i think we have 2 possibilities. 1. to try to contact a big ME, fibromyalgia, Lyme,…organisation from our kind of diseas and ask them to make a big call to their members. If we post a promotion on a page it brings only few votes – it has to be someone from that community. 2. to try to find some kids organisations from our area and ask them to vote for us.
I think without this we will not be sucessfull. So any suggestions are welcome.

Hope123 December 6, 2012 at 6:04 pm

I wonder if the problem is people think they only need to vote ONCE. The reason I say this is that we have 3,258 supporters but we only have 4,163 votes. If each supporter voted more than once, shouldn't we have somewhere around 6,400 instead? It's possible some people only started voting yesterday but this would be balanced somewhat by people like me who've voted everyday.

Purple December 6, 2012 at 8:30 pm

Has anyone experienced problems with registering on the Aviva website? Three people said that they tried to register but the confirmation email with the link to finalise registration has not arrived.

Aileen December 6, 2012 at 8:42 pm

have you checked your spam folder? or trash?

Ember December 6, 2012 at 8:42 pm
Purple

Has anyone experienced problems with registering on the Aviva website? Three people said that they tried to register but the confirmation email with the link to finalise registration has not arrived.

A friend of mine complained of the same problem. When she tried to register again, she was informed that she was already registered.

Aileen December 6, 2012 at 8:47 pm

that's not good. thanks for letting us know.

Little Bluestem December 6, 2012 at 9:21 pm

How about each of us who is voting asking a couple of other people to vote. If just half of them actually did, our votes would double. There are instructions for voting that can be cut and pasted.

Kati December 6, 2012 at 10:24 pm

Onder the tab. "About the competition" the FAQ, for those who have trouble registering, there is a contact page, so the problem could be corrected for them. (On the Aviva page)

It's happened to one of my friend.

Purple December 7, 2012 at 1:29 am
Kati

Onder the tab. "About the competition" the FAQ, for those who have trouble registering, there is a contact page, so the problem could be corrected for them. (On the Aviva page)

It's happened to one of my friend.

Thank you, Kati. I fear this will put off potential voters who don't speak English and just follow instructions in other languages.

The problem still seems to be persisting.

Tuha December 7, 2012 at 1:39 am
Hope123

I wonder if the problem is people think they only need to vote ONCE. The reason I say this is that we have 3,258 supporters but we only have 4,163 votes. If each supporter voted more than once, shouldn't we have somewhere around 6,400 instead? It's possible some people only started voting yesterday but this would be balanced somewhat by people like me who've voted everyday.

We have 3,258 suporters but I think that they count also the supporters from the first round and if I remember correctly I think we started the second round already with around 2600 supporters so we got only 600 new ones. It´s sure that a lot of supporters vote just once becuase they are not motivated enough or they just forgot. Also a lot of supporters from the first round dont vote.

There is also 1 way how to bring more daily votes. It´s ok if from 1 house 4-5 people vote – so I asked the passwords from my parents and close friends email adresses or facebook adresses and I am voting instead of them. So like this I am voting directly from my house and bringing 4-5 votes. Then I asked my other friends to vote for themselfs but I dont know how many of them do it. I try to encourage them every day and if I see someone log in on facebook I do a small chat with him and I ask him to vote – he always does – he cannot refuse easily like when you only send an email :-)

Little Bluestem December 7, 2012 at 2:49 am

Mark, Kina, etc
That is a very nice poster that Kati created. Could it be put on the forum main page, with Kati‘s permission of course? I realize that it is banner shaped, but it might fit to the right of “Phoenix Rising ME / CFS Forums”.

Tuha, Do you know that if they notice that too many people are voting from your computer, they may disqualify your votes?

Sasha December 7, 2012 at 3:04 am

I've just sorted by 'most votes' and filtered by 'large' but the ranks and votes don't agree (i.e. if I sorted by the numbers of votes I'd get a different ranking than the ones provided).

Anybody know what I've done wrong there, and how to find out what our actual position is?

Anyway, just did this morning's vote! :)

Tuha December 7, 2012 at 3:10 am

Tuha, Do you know that if they notice that too many people are voting from your computer, they may disqualify your votes?[/quote]

It´s normal that from 1 computer vote more people if you live in the same house. of course you cannot exagerate and bring 50 votes from 1 computer. 4-5 votes are Ok because it´s just normal that this number of people live in the same house. I also vote from 2 computers because we have 2 at home – so IP adresses should be different

Tuha December 7, 2012 at 3:20 am
Sasha

I've just sorted by 'most votes' and filtered by 'large' but the ranks and votes don't agree (i.e. if I sorted by the numbers of votes I'd get a different ranking than the ones provided).

Anybody know what I've done wrong there, and how to find out what our actual position is?

Anyway, just did this morning's vote! :)

Sasha, we are currently in the 13th positions. Sometimes you have to click directly on the organisations to see the right numbers or you have to refresh the site but then it shows wrong numbers for other organisations – they have some technical problems there. Today I will do another statistic like yeasterday but I will do it a bit later because yeasterday I did it in the time when americans were sleeping and in this time our position is a bit better. But the competition will finish in time when americans are awake so this is more relevant.

Sasha December 7, 2012 at 3:35 am

Thanks, Tuha – it's a pity they haven't got that quite sorted.

Hope123 December 7, 2012 at 3:44 am

This seems pretty obvious and maybe it's already been done but have people contacted the two Canadian orgs, FM-CFS Canada and the ME/FM Action Network to send out an e-blast to their members?

Also, I don't keep up with all the CFIDS Association newsletters but have they featured this contest at all or can they send out a letter to their members? I don't know what to expect their response to be since they are no longer considered a patient advocacy group but this contest is about supporting a research center as well.

I just sent out a reminder e-mail to the group I'm part of and reminded people to vote daily and not just once.

snowathlete December 7, 2012 at 6:38 am

we have 4711 votes now.
its a good idea to facebook/tweet about it to friends and family. would make a big difference if we all did that and got just one or two extra votes each.

Aileen December 7, 2012 at 8:55 am
Tuha

There is also 1 way how to bring more dailyvotes. It´s ok if from 1 house 4-5 people vote – so I asked the passwords from my parents and close friends email adresses or facebook adresses and I am voting instead of them. So like this I am voting directly from my house and bringing 4-5 votes. :)

If these people are in the same house as you, fine. If not, you shouldn't be doing this. Proxy voting as it is called is not allowed. I wish it were.

Aileen December 7, 2012 at 8:58 am
Hope123

This seems pretty obvious and maybe it's already been done but have people contacted the two Canadian orgs, FM-CFS Canada and the ME/FM Action Network to send out an e-blast to their members?

ME/FM Action Network sent out a message a few days prior and you could sign up for daily reminders. They said in their email that it was the only message they'd be sending though.

I just sent out a reminder e-mail to the group I'm part of and reminded people to vote daily and not just once.

Thank you!

Sasha December 7, 2012 at 9:06 am

I've just done a new signature, now that the Ampligen thing is over – please feel free to copy.

The wording on the Aviva banner and the title of the project may play a little bit against getting support – they risk giving the impression that it's about equipment for a local ('community') treatment clinic that would benefit relatively few people, and it doesn't even mention ME/CFS, fibro or Lyme. It also looks like it's probably Facebook, which a lot of people won't touch.

It's not, of course, and I think if we can have signatures that push that it's research, we'll all benefit, you don't need facebook, it's for ME/fibro/Lyme, you can vote from any country, that could help.

Tuha December 7, 2012 at 9:32 am
Aileen

If these people are in the same house as you, fine. If not, you shouldn't be doing this. Proxy voting as it is called is not allowed. I wish it were.

Aileen, my parents live with me but even if they woudnt I dont see anything bad there. they would do it for me. just they are older they dont use computer too much and it´s easier this way. even if it´s not allowed i dont see there any violating of the "correct" behiving.
actually the idea of these contests is really stupid. I vote for our organisation and I dont know anything about the others, if we wouldnt be in such desperate situation i would never participate in these contests – so i wouldnt moralise too much about these contests

Aileen December 7, 2012 at 11:59 am

If people are voting for others who are NOT living with them, eg, a relative who does not have a computer, this is called "proxy voting". Aviva has made it very clear to us that this is not allowed and votes will be deducted if this is suspected. If a project gets caught doing a lot of this, who knows what Aviva would do. Throw them out of the competition? Believe me, I wish we could do this. I'd be doing it. I have a couple of elderly relatives who would be happy to help if only they had a computer. :(

As for people living in the same house, it seems silly to make the person sit at the computer and move the mouse as you sit beside them telling them every move to make!

Aileen December 7, 2012 at 12:06 pm

The Aviva leaderboard is finally working again!! We are still in 14th place. 164 votes behind #13. The 3 projects we have to pass to get to the top 10 are all playgrounds! Little local projects – we can do this!!

Tuha December 7, 2012 at 2:34 pm

I checked how the organisations grow up. after 33 hours – we are in the 14 th place but from the first 15 organisations be did the smallest move. We need at least 500 votes more. Here are the results:

1. Undercurrent Youth Centre – 8785 (+3249)
2. Riehl skate park – 8449 (+2771)
3. Une vraie cour d'école pour ados! – 8384 (+2921)
4. Fighting for Healthy, Affordable Food in North End Halifax – 7852 (+2732)
5. Stay Strong Nick Roma 7074 (+2612)

6. Nouveau gymnase pour notre club de gymnastique Les Hirondelles – 6905 (+2423)
7. Exoskeleton for Trevor Greene, Canadian Veteran – 6878 (+2099)
8. Harder-4-Carter: The Carter Antila Memorial SkatePark – 6655 (+2445)
9. Projet Paradis / Paradis Project – 5804 (+2312)
10. Non-profit Companion Animal Hospital & Shelter – 5741 (+1865)

11. Castle Park's "Play for ALL", universally accessible playground – 5719 (+1952)
12. Un préau pour L'École des Enfants-de-la-Terre – 5681 (+2124)
13. The Power of Play – A Barrier Free Playground – 5398 (+2069)
14. Medical equipment for a new chronic diseases clinic in Vancouver – 5222 (+1702)
15. Vera M. Welsh & community of Lac La Biche needs a new playground 4840 (+1903)

16. Sensory Therapy Room for kids at Lutherwood 4595 (+1570)
17. Building Change -A New Shelter for the RCSPCA 4393 (+1442)
18. Sports for all 4328 (+1426)
19. Valley Park Go Green Cricket Field Project – Let There Be Lights 4164 (+1281)
20. Volunteering to Independence Program "the Katimavik VIP program" 4162 (+1444)

It´s possible to find 500 votes more but everyone has to try to find someone and also we should try to find some other strategies so all suggestions are welcome

Tuha December 7, 2012 at 3:10 pm

Is someone in touch with Robert Miller? He did some ME/CFS campaigns following by many ME/CFS patients. I think he has a mailing list of a lot of patients. Maybe it´s worth to contact him and to ask him to send the poster about aviva contest with 2-3 encouraging sentences from him to the patients on the mailing list. I would do it allone but I think I saw somewhere his appologies that he doesnt answer a lot to the people who he doesnt know because he gets a lot of messages. So maybe we could reach him easier if someone is in tuch with him. So please, if you know him and you would like to contact him with this subject just let me know – if there wont be anyone within next 2-3 hours I will do it by myself

Hope123 December 7, 2012 at 4:37 pm
Aileen
Hope123

This seems pretty obvious and maybe it's already been done but have people contacted the two Canadian orgs, FM-CFS Canada and the ME/FM Action Network to send out an e-blast to their members?

ME/FM Action Network sent out a message a few days prior and you could sign up for daily reminders. They said in their email that it was the only message they'd be sending though.

I just sent out a reminder e-mail to the group I'm part of and reminded people to vote daily and not just once.

Thank you!

That's too bad that ME/FM Action Network only sent out one message and that's it. I can understand that they don't want to bother their members but this is a rare opportunity for a clinic in their country. If I were Canadian, I would bug their management to send out a second message updating people on the status of the Clinic and asking them to consider voting again. A group I'm part of also did something similar a while back and sending out the second message did increase our votes quite a bit towards the end of the contest. We ended up winning.

Also, a tact I have not tried but might help to encourage people to vote is to remind them that since only 10-20% with ME/CFS actually have been diagnosed, their ONE vote represents that of 8-9 people who haven't been diagnosed but are suffering from this as well. Those 8-9 people, who might have voted if they knew this was what they had, can't vote because they're still in the dark about this. In other words, ONE vote for ME/CFS is more than one vote —- it potentially represents 8-9 votes. I've always thought this was a major obstacle in why we have a hard time winning these contests — a lot of people don't know they have this.

GcMAF Australia December 7, 2012 at 6:07 pm

[quote="Sasha,
What did you do in the war? ;) .[/quote]
i fought in the trenches
i fought on the benches
i fought on the beaches
i fought in the bleaches
so this disease we quenches

waiting December 7, 2012 at 11:09 pm

Done 5574.

GcMAF Australia December 8, 2012 at 12:12 am

maybe we should ask for a playground!!??

Little Bluestem December 8, 2012 at 1:33 am

5700 votes, 14th place.

Tuha December 8, 2012 at 2:13 pm

I checked again how the organisations grow up after 21 hours. I checked exactly at the hour when it will finish because sometimes the results depends when you check because we have a lot of european and australian voters. During the last 21 hours we grow the most from the organisations between 10th – 14 th positions but the differences were not too significant to help us. So it means we need more votes – we are around 579 votes behind the 10 th position. Here are the results:

1. Undercurrent Youth Centre – 10432 (+1647)
2. Une vraie cour d'école pour ados! – 9872 (+1488)
3. Riehl skate park – 9607 (+1158)

4. Fighting for Healthy, Affordable Food in North End Halifax – 9104 (+1252)
5. Stay Strong Nick Roma 8335 (+1261)

6. Nouveau gymnase pour notre club de gymnastique Les Hirondelles – 8191 (+1286)
7. Exoskeleton for Trevor Greene, Canadian Veteran – 8015 (+1137)
8. Harder-4-Carter: The Carter Antila Memorial SkatePark – 7464 (+809)
9. Un préau pour L'École des Enfants-de-la-Terre – 6927 (+1246)
10. Projet Paradis / Paradis Project – 6811 (+1007)

11. Non-profit Companion Animal Hospital & Shelter – 6707 (+966)
12. Castle Park's "Play for ALL", universally accessible playground – 6487 (+768)
13. The Power of Play – A Barrier Free Playground – 6358 (+960)
14. Medical equipment for a new chronic diseases clinic in Vancouver – 6232 (+1010)
15. Vera M. Welsh & community of Lac La Biche needs a new playground 5901 (+1061)

16. Building Change -A New Shelter for the RCSPCA 5102 (+709)
17. Sensory Therapy Room for kids at Lutherwood 5035 (+440)
18. Sports for all 4912 (+584)
19. Valley Park Go Green Cricket Field Project – Let There Be Lights 4871 (+707)
20. Volunteering to Independence Program "the Katimavik VIP program" 4823 (+661)

Purple December 8, 2012 at 2:33 pm

Day 6 is in full swing – we need all the votes we can get to move up the leaderboard!

View attachment 4239

waiting December 8, 2012 at 11:22 pm

Done 6830

Purple December 9, 2012 at 3:17 am
GcMAF Australia

maybe we should ask for a playground!!??

We have recently been overtaken by http://www.avivacommunityfund.org/ideas/acf14955 – Vera M. Welsh & community of Lac La Biche needs a new playground. This project was right at the bottom in the first days of the contest and now seems to be accelerating. There could be others that can suddenly have the ability to rally lots of votes.

So we all need to vote and ask as many people as possible!

SpecialK82 December 9, 2012 at 12:45 pm

Just a reminder – there may be votes thrown out at the end of the contest if fraudulent activity is found, so let's keep voting and voting no matter how we look on a given day. The first phase of this contest we barely squeaked in, only after they adjusted the vote counts.

Tuha December 9, 2012 at 4:08 pm

I checked again how the organisations grow up after 28 hours (I wanted after 24 but I was outside). We are still in the 14 th but around 851 votes behind the 10 th place. Here are the results:

1. Undercurrent Youth Centre – 12672 (+2240)
2. Une vraie cour d'école pour ados! – 12044 (+2172)
3. Riehl skate park – 11672 (+2065)
4. Fighting for Healthy, Affordable Food in North End Halifax – 11301 (+2197)
5. Stay Strong Nick Roma 10545 (+2210)

6. Nouveau gymnase pour notre club de gymnastique Les Hirondelles – 10044 (+1853)
7. Exoskeleton for Trevor Greene, Canadian Veteran – 9706 (+1691)
8. Harder-4-Carter: The Carter Antila Memorial SkatePark – 9013 (+1549)
9. Projet Paradis / Paradis Project – 8622 (+1811)
10. Un préau pour L'École des Enfants-de-la-Terre – 8597 (+1670)

11. Castle Park's "Play for ALL", universally accessible playground – 8171 (+1684)
12. Non-profit Companion Animal Hospital & Shelter – 8085 (+1378)
13. Vera M. Welsh & community of Lac La Biche needs a new playground – 7861 (+1960)
14. Medical equipment for a new chronic diseases clinic in Vancouver – 7746 (+1514)
15. The Power of Play – A Barrier Free Playground – 7677 (+1319)

16. Excellence for Us! – 7302
17. Building Change -A New Shelter for the RCSPCA – 6133 (+1031)
18. Valley Park Go Green Cricket Field Project – Let There Be Lights – 6069 (+1198)
19. Sensory Therapy Room for kids at Lutherwood – 5835 (+800)
20. Sports for all – 5610 (+698)
21. Volunteering to Independence Program "the Katimavik VIP program" – 5552 (+729)

waiting December 9, 2012 at 11:16 pm
Sasha December 10, 2012 at 3:09 am

Just voted… we're still in 14th place…

Tuha December 10, 2012 at 3:26 am

just one idea. we should try to involve more kids in this contest. Kids have often a lot of friends and iif they are a bit motivated they can bring a lot of votes. So if you have a kid in your family just ask him if he can promote our organisation between his friends.

Tuha December 10, 2012 at 11:28 am

New results after 20 hours. There are exactly 2 days to go:

1. Undercurrent Youth Centre – 14552 (+1880)

2. Une vraie cour d'école pour ados! – 13501 (+1457)

3. Riehl skate park – 13432 (+1760)

4. Stay Strong Nick Roma 13063 (+2518)

5. Fighting for Healthy, Affordable Food in North End Halifax – 12969 (+1668)

6. Nouveau gymnase pour notre club de gymnastique Les Hirondelles – 11783 (+1739)

7. Exoskeleton for Trevor Greene, Canadian Veteran – 11423 (+1717)

8. Harder-4-Carter: The Carter Antila Memorial SkatePark – 10281 (+1268)

9. Projet Paradis / Paradis Project – 10060 (+1438)

10. Un préau pour L'École des Enfants-de-la-Terre – 9954 (+1357)

11. Castle Park's "Play for ALL", universally accessible playground – 9600 (+1429)

12. Vera M. Welsh & community of Lac La Biche needs a new playground – 9471 (+1610)

13. Non-profit Companion Animal Hospital & Shelter – 9384 (+1299)

14. Medical equipment for a new chronic diseases clinic in Vancouver – 8923 (+1177)

15. The Power of Play – A Barrier Free Playground – 8789 (+1112)

16. Excellence for Us! – 8744 (+1442)

17. Valley Park Go Green Cricket Field Project – Let There Be Lights – 7010 (+941)

18. Building Change -A New Shelter for the RCSPCA – 6815 (+682)

19. Sensory Therapy Room for kids at Lutherwood – 6753 (+918)

20. Sports for all – 6431 (+821)

21. Volunteering to Independence Program "the Katimavik VIP program" – 6063 (+511)

waiting December 10, 2012 at 11:10 pm
Kati December 11, 2012 at 1:01 am

While we are not currently winning in number of votes, we are carrying a huge, round the world awareness campaigns for the most neglected diseases of the developed world. Thank you so much for those wh have voted and shared this contestentry to their networks.

Being banned from Facebook, I have shared the contest on Twitter, sent to all the MP and MPP, have had a few noteworthy retweets which made my work all worthy. Being in Vancouver I have alerted the media, have shared with several health care groups and mentioned the supportive groups to the Bc Women's Foundation.

Speaking of which, they were impressed, almost 2 weeks ago to have had 100 views of the Dr Bested video, which speaks volumes about the neglect. By now, They have 1280 views. I am sure they are pleased with their investment.

So like I said, we may not be on the top, but we win for we are spreading much needed awareness.

Thank you. Keep on voting!

View attachment 4244

Sasha December 11, 2012 at 2:36 am
Kati

While we are not currently winning in number of votes, we are carrying a huge, round the world awareness campaigns for the most neglected diseases of the developed world. Thank you so much for those wh have voted and shared this contestentry to their networks.

[...]

Speaking of which, they were impressed, almost 2 weeks ago to have had 100 views of the Dr Bested video, which speaks volumes about the neglect. By now, They have 1280 views. I am sure they are pleased with their investment.

That's a very good point, Kati! :thumbsup:

Kati December 11, 2012 at 3:15 am

This said, we are still in contention for a qualifcation, we need to continue putting the pedal to the metal, each ad every vote counts. let's do this!

it's not over until it's over!

waiting December 11, 2012 at 11:37 pm
Kati December 11, 2012 at 11:53 pm

Thank you so much for voting and walking the walk with us.
Let's finish the best we can.

View attachment 4245

Little Bluestem December 12, 2012 at 2:11 am

11911

I have made my last votes. The contest is over in less that half a day. I don’t see any way to “unregister”. Maybe I will change my password to “password” in case there is another contest and I forget who I was voting for this time.

I see our votes per day has risen, but we dropped to 16th place. Where is Tuha? I trust his figures more than what is on the Aviva site. Does anyone know when the official results will be posted?

VOTE! VOTE! VOTE!

Sasha December 12, 2012 at 3:27 am

Just voted – I don't know when the final result is announced.

maryb December 12, 2012 at 4:48 am

Last day get voting folks……….

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