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!
@
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.
