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

View the Post on the Blog
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



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.



How 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:



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.
View the Post on the Blog
 
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.
 
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 :)
 
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?
 
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, 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
 
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.
 
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.
 
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.
 
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!
 
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.
 
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
 
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!
 
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!!
 
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
 
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
 
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.