The BIG CHASE: funding US ME/CFS non-profits

On the language issue: Frank's video http://www.youtube.com/watch?v=Z0tikeIGtc4 might be enough to explain how to vote. (Apologies if this has been said before)

 

If people could "like" posts they see on Facebook calling for people to vote in Chase Community Giving, it'd be good. I think people tend to pay more attention to messages that have likes in them, especially if there are more than a couple of likes (and don't just wait until there are a couple of other people who have already "liked" it).

 

Somebody just posted this note in French in the WPI voting box. It translates as something like:
"Help CFS research by voting for the Whittemore Peterson Institute (WPI). One click of the mouse is sufficient. The WPI needs 1000 to obtain first place. Voting is open until May 4. Go on the link (click on the link I presume)."

 

There are instructions in French on "Encphalomylite Myalgique/Syndrome de fatigue chronique"
http://www.facebook.com/pages/group.php?gid=12289993892#!

 

I just sent out an e-mail to my whole synagogue group of over 200 members asking them to vote!

 

Excellent

 

wolves are ahead

I can't believe the wolves are still ahead of us. Everyday I log in to see if we have overcome them, I mean really?

Actually we are in much greater need than any in the top three IMO. No one write me any hate mail about the ecosystem or needing drums for world peace, etc. I'm just sayin...

 

If this was to be repeated in round 2:

Charity Location Votes
$500,000 for: 1 YOUTH EDUCATION IN THE ARTS Allentown, PA 3,276
$400,000 for: 2 DRUM CORPS INTERNATIONAL INC Indianapolis, IN 3,158
$300,000 for: 3 INTERNATIONAL WOLF CENTER Ely, MN 2,617
$200,000 for: 4 Whittemore Peterson Institute for Neuro-Immune Disease 2,027
$200,000 for: 5 Joyful Heart Foundation New York, NY 1,868
$100,000 for: 6 SCV Santa Clara, CA 1,527
$100,000 for: 7 The Blue Devils Concord, CA 1,106
$100,000 for: 8 GLOBAL KIDS INC New York, NY 1,045
$100,000 for: 9 VINEYARD COMMUNITY CENTER Westerville, OH 984
$100,000 for: 10 WILDLIFE WAYSTATION Angeles National Forest, CA 838
$40,000 for: 11 DOGS FOR THE DEAF INC Central Point, OR 747
$40,000 for: 12 ONE STARFISH REHOMING CONNECTIONS INC Columbus, WI 636
$40,000 for: 13 AMIGOS Houston, TX 624
$40,000 for: 14 The CFIDS Association of America Charlotte, NC 587

 

Thanks for posting prize amounts for each level Dolphin, I hadn't seen that before! Gosh, for the difference of $500,000 or $200,000 for the WPI we only need about 1200 votes, it seems so ridiculously easy. We also need to keep bringing up the CAA (16th to 14th in the last two days) - they should be #1 and #2 and win $950,000 for CFS research!

 

Yes, it frustrating.
I think for Round #2, we will need to write to our FB friends directly esp. those with ME/CFS and the like. So many clearly aren't taking the hint from FB groups, general news feeds people get from their FB friends as well as information in other places around the Internet.

As I think I've said before, one can see who has voted out of one's FB friends by looking at "Activity --> My Activity" on the leaderboard.

ETA: I see Music for All Inc has just "flown right past" the CAA:

 

I think there are some solution how to improve. The last year during the voting for Pandora I discovered 1 think. I had probably 50 facebook friends - I sent them an email and only 3 of them voted. I dont like to annoy the people but then I told myself that we need some money so I started. I just log on my facebook account and there you can see some of your friends who are on-line - then you can make a small chat with them and you can ask them directly to vote immediately - you can follow them and if they have a problem you can help them. And you can controle if they really voted Like this I got 30 votes and noone refused to do it. I think this is one solution - if someone think that its maybe a bit annoying - maybe a bit but what is more important...I think we need that money.
I already wanted to do it but maybe for the first round its not necessary - i am prepare for the second round - who will annoy the friends with me?

another solution - you have a visit, a party, or you visit someone and there is a computer - you can ask the people there, its the easiest way. The last year I had a small party with 6 people - 4 had facebook accounts so they voted and 2 of them created a new account and they also voted.

also one possibility is - here on PR forum is also chat section - so if there are some people, we can ask them if they voted - i think we would get some votes like this

another question is CAA - is it good to vote for CAA? I think the patient community is angry of CAA. Someone wrote it already here that they promissed to use all money for research - I also saw it on their FB site. I think this could change patients opinion and they would get more votes. But I think they need to do this promiss stronger. Who knows now about it. What do you think about?

 

Great work, Tuha. I think I will probably contact my friends directly although I expect I could be busy around then.

I'm not sure I'll do what you do but even 6% (3/50) is good. As I may have said, I think ME/CFS friends would probably be the most important to persuade as if you persuade them, they can get excited and they might start trying to persuade others, a sort of chain-reaction.

 

I have little bit another opinion. Yes, if we persuade the other ME/CFS patients and they would start to persuade their friends - it will be great. But how I see the situation - we did such a big publicity - i know a lot of people who contacted the ME/CFS organisations, support groups, forums,... in all over the world - if you check a ME/cfs web site - its almost everywhere a small publicity about the competition and how they try to encourage the members to vote but the reaction is still quite small. I think we cannot do much more for the publicity.
I think the last solution is - what I already wrote - to "attack" directly your facebook friends when they are on-line. maybe it seems like a big work but i can tell you that it doesnt take more than 5 minutes with 1 friend - so the last year i spent with this activity by contacting 30 friends maybe 150 minutes during 1 week - for me its ok. to get 3 people from 50 is also good but compare to the potential and that we will maybe need every vote - its not too much. it doesnt have to be 30, if someone has a time or energy only for 5,6,10 - its also good

 

I like your enthusiasm. Maybe I will do it. Before I got (very) ill, I collected for various charities. It was started in the school where we got half-days to collect for a particular charity. The first year, I did rubbish: I stood on the main street in the city where there were lots and lots of people; but there were really too many people and I wasn't making an impression with anybody.

The next year, I vowed to do better. They also incentivised us by offering a free weekday afternoon cinema ticket for each amount of money, X, raised i.e. i.e. if you raised y where 5X<y<6X you got 5 cinema tickets. Anyway, the trick was to go up to people and ask them, one on one, would they like to help. I did very well the second year. Even though I wouldn't be a loud or brash person or in any rush to go up to strangers normally, put a collection box in my hand and I became more willing and I did well over the years. I remember in college, three of us went out collecting for a charity and I raised a lot more than the other two combined. So anyway, like with what you did, direct requests can make a difference.

Also, I see it as being a bit like asking for money for the cause (even though it costs them nothing). Somewhere between 5,000 and 10,000 votes would probably get us first prize (wild guess) in the short period next time. So $500,000/10,000=$50 for each vote. And if you're collecting for the CAA, one can add to that if the person also votes for the CAA. So well worth while making an effort in this case.

 

"Data" from another person who wrote to lots of people on their friend's list - saw this as a comment elsewhere:

 

voted the bring on the votes facebook contest wall this am, and got 28 votes back thus far.

 

Wow, 28 votes, that's a great amount (and I'm guessing that might not be all either).

 

Instructions in Italian are on the "CFS Associazione Italiana / CFS Italian Association" page (April 22):
http://www.facebook.com/pages/CFS-Associazione-Italiana-CFS-Italian-Association/268416998510

 

Some great ideas here! Helen, I didn't know about the Bring On the Votes page on Facebook. That's a wonderful idea! And you got 28 votes in just a short time! I checked and saw that many people come on there with many posts. I think I'll give it a try. Also, Tuha, I like your idea of engaging people who are doing online chat at Facebook. Had not thought of that. My young relatives are worn out with my requests to vote in past contests, so I'm not asking them in the first round. But I do plan to ask them in the second. I'll change my privacy settings so that anything I place on their wall will be viewed by all their friends and as many people as possible. While I keep my no. of friends small, the young relatives have hundreds of friends. Unfortunately, not too many of my older relatives are on Facebook.

 

@frenchtulip- if you would take on this one http://voteexchange.niceboard.com/ that would be more helpful- there is an explanation above. I think this is good practise for the next round. PS- I ended up with 44 votes today from bring on the votes, but I'm now obligated to vote for everyones cute kids and dogs tomorrow too. Sigh....