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

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… add one }

  • Kati December 1, 2012, 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, 7:33 pm
    Kati

    To find our project quickly, google ACF13624

    Or follow this link.

  • Sasha December 2, 2012, 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, 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, 11:03 am

    Voting just started.

  • madietodd December 3, 2012, 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, 11:49 am

    Done!

  • SpecialK82 December 3, 2012, 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, 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, 1:28 pm

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

  • Clodomir December 3, 2012, 2:35 pm

    Done!

  • waiting December 3, 2012, 5:10 pm

    Done!

  • SickOfSickness December 3, 2012, 5:54 pm

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

  • Purple December 3, 2012, 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, 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, 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, 10:30 pm

    I have voted

  • Purple December 3, 2012, 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, 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. 😳

    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, 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, 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, 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, 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, 1:02 am

    1070 votes.

    GG

  • Kati December 4, 2012, 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, 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, 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, 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, 3:02 am

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

    View attachment 4221

  • Sasha December 4, 2012, 3:04 am

    Just noticed your avatar, Kati – clever!

  • Nielk December 4, 2012, 7:07 am

    [​IMG]

  • Anne December 4, 2012, 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, 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, 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, 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, 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, 4:14 am

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

  • Sasha December 5, 2012, 6:35 am

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

  • Aileen December 5, 2012, 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, 10:50 am

    Done.

  • Anne December 5, 2012, 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, 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, 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, 11:25 pm

    Voted.

    3237

    GG

  • waiting December 5, 2012, 11:37 pm

    Done. 3263

  • Aileen December 6, 2012, 12:02 am

    Bad news folks. We received 105 fewer votes Day 3 (just ended) than Day 2. 😥
    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, 12:50 am
    Aileen

    Bad news folks. We received 105 fewer votes Day 3 (just ended) than Day 2. 😥
    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, 1:32 am
    Aileen

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

    Negative ads?

  • Aileen December 6, 2012, 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. 😆

  • Sasha December 6, 2012, 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.