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

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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.

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Last day get voting folks..........

 

Please continue voting throughout the last day.

 

Only 4 hours left to vote!!!!

 

I voted every day on FaceBook. I hope everybody else did, and does today.

 

It was good work from everyone. there is still a small chance that we can do it to the finall if some organisations did a lot of illegal votes. remember that in the first round a lot of organisations lost hundreds of votes because of cheating

 

The voting period has now ended, and as some may have mentioned it, we are not expected to make it to the finals.

There maybe several reasons for this, however there is no blame to be put on anybody for everybody tried their best and gae their everything.

A friend of mine told me a few days ago "you're not winning the popularity contest", and it's exactly what it is, a popularity contest.

Lessons to be had,
- our number of votes could have put us in finals with the smaller budgets categories. thoughthis may not be true for next year.
- presenting a compelling story, putting faces to the stories. It was suggested to me just yesterday and by then I felt it was too late. Other projects had compelling stories. It's what wins people's hearts.

I still feel we are winners after this contest for we have worked together and have spent the last 10 days on passing the word o these neglected illnesses and the newest clinic that is coming.

thank you toeach and everyone of you.

 

Those are all good thoughts, Kati, and things to think about for the future.

Does anyone know when the next voting contest is?

 

Here are my thoughts post-contest:

1) The sharing of votes with other orgs. This could have been made clearer. Everyone was given 15 votes so that there were 5 leftover votes even after voting for the clinic once for the whole 10 days. In other contest, the trading of votes was more emphasized so probably more people voted for other charities and asked them to vote for us which might have helped put us over the top.

2) Please share the results with any groups or e-mail lists you are on, even if we lose. This is not only to thank the people who did vote and supported the charity but to subtlely remind those who did not vote what happens when they don't participate. Specifically, list what position we ended up in and how many votes we lost by.

3) By my calculations, with 4,000+ supporters and only 11,000 or so votes when I last voted, it averages out to 2.5 votes per person. That is, some people voted every day but others only voted once, with a great majority only voting once. If each supporter had voted even half the time (5 votes), we would have had 20,000+ votes finally and likely ended up in the top 10.

4) The tagline needs to grab people's attention more. Saying that the money will buy equipment for a chronic disease clinic is accurate but may seem boring to others (esp. those not affected by CFS) and doesn't get at the heart of what getting the money means. People may also wonder why the clinic couldn't buy equipment itself and perhaps an explanation would have helped. Would the clinic have provided free or sliding scale care for low income patients? Mentioning this might influence voters as well.

I'm no ad copywriter but something along the lines of "Help solve a medical mystery for 1 million Canadians!", "Help save a life!", etc. would not only be accurate but also perhaps more inspiring. The details of the program do mention this but some people won't be reading details. I noticed that some of the top 10 projects only benefitted one person; it might help to emphasize that this center helps many Canadians all over Canada and not just in one province.

5) Alternatively, as mentioned above, a video of a single child with ME/CFS can have great impact. "One death is a tragedy; one million deaths is a statistic." But there's nothing against doing both -- have the tagline above and a video of a single child and his/her family.

 

Hope, thank you for this very constructive input.

#2 is a very important point,returning to our groups and voters. in fact I am continuing to post here and there on Twitter, and I keep on promoting Dr Bested's video, which speaks volumes.

i would have loved to see a patient story on video. A friend would have been ready to do it, however the foundation said they would do one. It is certainly good to remember for the future. It can be really difficult to recruit patients for a video, and get a compelling story. i am not keen to be in front of a camera. Finding the right person is difficult, and on top of that we are dealing with sick organizers. I would love to see the Foundation finding a "poster child".

As for the voting, retaining the voters can be easier to do if we send them to the facebook event page, sending them reminders. It's a bit tougher to do on Twitter where you need to send to large audiences to get a response. Then if you post a gazillion times like I did, people get really annoyed at the multiple posting. There is a fine line between compelling and annoying.

I believe we can certainly build from here. It was my first time. It's been really exciting and a valuable experience for me, the foundation, and great exposure for the clinic, which has not even opened its doors yet!

 

I looked at the ranking by most votes on the Aviva site and all of the projects now show 0 votes. It says, “Grand Prize winners announced Jan 29th, 2013.” I looked at the Vancouver Chronic Diseases Clinic page and it also shows 0 votes. It says, “Finalists will be announced on December 17th.”

 

The tagline needs to grab people's attention more. Saying that the money will buy equipment for a chronic disease clinic is accurate but may seem boring to others (esp. those not affected by CFS) and doesn't get at the heart of what getting the money means. People may also wonder why the clinic couldn't buy equipment itself and perhaps an explanation would have helped. Would the clinic have provided free or sliding scale care for low income patients? Mentioning this might influence voters as well.

I'm no ad copywriter but something along the lines of "Help solve a medical mystery for 1 million Canadians!", "Help save a life!", etc. would not only be accurate but also perhaps more inspiring. The details of the program do mention this but some people won't be reading details. I noticed that some of the top 10 projects only benefitted one person; it might help to emphasize that this center helps many Canadians all over Canada and not just in one province.

Hi Hope - I think this is a really good point and I don't think the Aviva banner served us at all well, even on PR - it said something like 'Aviva community' which made it sound like a very local project, and 'medical equipment' for a 'clinic' which made it sound like only patients getting treated there would benefit, and the name of the clinic didn't mention ME, so it was sounding like a very local thing for treating patients with some vague collection of diseases. It wasn't - it was for a research biobank for ME/CFS/fibro patients to get at the very cause of our diseases and would benefit patients worldwide, not just in Canada. I hope we had enough coverage of the contest on PR to ram that home (that was why I wrote my article).

It's a good question about what to write to get the support of people both within and outside our own forums. I think it's a really good idea that's being suggested here, to think about how we write taglines and thread titles for future contests.