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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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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
 
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!
 
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!
 
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.
 
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!
 
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.
 
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]
 
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.