Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Nat'l ME/FM Action Network in Aviva contest for $100K for ME/FM Biomedial Research!

Discussion in 'Fundraising' started by frenchtulip, Sep 25, 2014.

  1. frenchtulip

    frenchtulip Senior Member

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    The National ME/FM Action Network in Canada is competing in the Aviva contest to win $100,000! Check out their ME/FM research entry https://www.avivacommunityfund.org/ideas/acf19712 Please get ready to start the DAILY vote on Sept. 29th. Share contest info on your page and in groups, if permitted. You may join the project event and get a daily reminder to vote https://www.facebook.com/events/436713819800556/ Let's help Canada win this one! It will help patients in every country! Thanks!
     
    WillowJ, rosie26, Aileen and 2 others like this.
  2. *GG*

    *GG* Senior Member

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    Is there a way to get a reminder via email instead of Facebook. I am not on Facebook every day. FYI

    GG
     
  3. Dolphin

    Dolphin Senior Member

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    One low-tech way would be for one or more person to post here when they vote (I'm not volunteering).
     
  4. *GG*

    *GG* Senior Member

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    I understand and try to do that, but if I forget, that doesn't help others, and who is going to remind me?

    GG
     
  5. Dolphin

    Dolphin Senior Member

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    Yes, I wasn't suggesting you remind yourself - I was throwing out the suggestion.

    I remember a few years ago, with some of the competitions, several people posted to a particular thread that they had voted. So perhaps a few people could respond to this thread.
     
  6. Aileen

    Aileen Senior Member

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    @frenchtulip
    Sorry to be the bearer of bad news but this is a non-starter. Because there is time to fix this, I am going to detail exactly what I think is wrong with it. I hope others will offer their opinions too. If we are to win, we must get the general public and members of an insurance company to vote for it.

    I read through the info on the project on it's project page on the contest site. Most members of the general public who start to read it will stop reading before they are halfway through. Few will get that far. This will generate NO INTEREST!

    Don't get me wrong, I think it is well written and explains the problem and what we need -- if the intended audience is a group of scientists, knowledgable and well read patients or a govt committee. Most people, including many patients, don't understand words like 'biomarkers' or 'biobank'. And there are too many unnecessary details.

    For the general public, it reads like something a politician would say when announcing funding for some new project. It is far too generic to grab attention and the project is not specific enough. It must be something that is easy to understand and that people can relate to. This is neither.

    In the past, people have voted for animal shelters, help for Johnny to get a specific surgery, a playground. And remember, the final decision on the winners rests with a panel of people from Aviva, with the same level of knowledge as the general public.

    This project needs a major revision while there is still time. Pick one thing to focus on. Something people can relate to. For example: Our org wants to make Canada a major player in researching these diseases. This project is to create a collection of stored blood samples that researchers can use to investigate ME/FM. With this collection, called a biobank, more research projects can be done, and sooner, for less money. Saves money, research done now not later, Canada becomes a world leader... isn't this worth your vote?

    Or perhaps ... Right now x% of Canadians are thought to have these diseases. It is very difficult to get diagnosed and some people try for years to find out what is wrong with them. Many are too sick to work and lose their jobs and can't get benefits. The problem is there is no test. That also means no effective treatment or cure. Please help us fund a research project to find a test. A test would mean a quick diagnosis, disability payments, and a chance for researchers to find treatments. ... Help us ensure a quick diagnosis, money coming in if you can't work, and hope for treatment or a cure for 1 in x number of Canadians.

    Forget about explaining how you are going to pick the project, or how you will tell us about the results or who you'll hire etc. Don't talk about building relationships, educating etc ... That's gov't sounding blah, blah, blah. It will turn people off immediately. No one cares.

    You must follow 3 simple rules: 1) keep it simple 2) explain at a 5th grade level 3) make sure the average person can see how it would effect them.

    To further explain point #3. Past winners are things people can relate it.
    Playgrounds, gym equipment - we were all kids once, many have kids. We understand how our kids would feel or we would have felt if we had no place to play or our school gym equipment was falling apart. People voted.
    Animal shelters - people love animals. we either have/had pets or friends or family do/did. We know how we would feel if they went missing and were out there cold, hungry, scared and unsafe. People voted.
    Health - a specific treatment for a specific person. Johnny needs this operation so he can walk. We'd want our kid to be able to walk. Or ... help Johnny's mom get the cancer med she needs but cannot afford. Would you want to be dying of cancer, your child about to lose mommy because you don't have the money for a hugely overpriced med? No, of course not. People vote.

    Now, read the page for our project. Compare the two. People will not vote.
     
    OverTheHills and *GG* like this.
  7. snowathlete

    snowathlete

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    WillowJ, Dolphin and *GG* like this.
  8. *GG*

    *GG* Senior Member

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    snowathlete likes this.
  9. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I just deleted the link to the last Aviva contest from my bookmarks a few days ago. :D
     
  10. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I think we have been through this before. The Aviva Voting page says:
    Is this really restricted to Canadian voters?
     
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    @Aileen , are you on facebook? it would be fantastic if you joined the group and helped write and plan projects
     
  12. May12th

    May12th

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    If anyone wants an email reminder they can send there email address to office@mefmaction.com and it will be added to a reminder distribution list used only for this contest.
     
    WillowJ, snowathlete and Dolphin like this.
  13. May12th

    May12th

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    They have always had this statement and allowed international voting.
     
  14. shannah

    shannah Senior Member

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    The email I received is this:


    Question: It says "One vote per day per email address". Does this mean if you have more than 1 email address, you can place one vote for each of the different addresses?
     
  15. Dolphin

    Dolphin Senior Member

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    It would be against the spirit of the contest anyway. However, a relative might let you use an account of theirs.
     
    WillowJ likes this.
  16. shannah

    shannah Senior Member

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    I would think so too Dolphin. That's why I'm trying to clarify it.
     
  17. May12th

    May12th

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    It's one vote per day per person. If two people live in the house they can both vote.
     
    WillowJ likes this.
  18. snowathlete

    snowathlete

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    In case it helps, 100,000 Canadian dollars is roughly equal to:
    90,000 US dollars
    55,000 Great British Pounds
    70,000 Euros
    102,000 Australian dollars
     
  19. Sasha

    Sasha Fine, thank you

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    I think this needs a new thread to announce that daily voting starts today. I'll set one up.
     
  20. frenchtulip

    frenchtulip Senior Member

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    Voting is open! Just voted, commented, shared & tweeted! A new thread has been set up.
     
    Dolphin and Sasha like this.

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