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

[Dolphin]

The first $50 000 for ME/CFS, we're almost there!

Frank, did you send out an action alert? I don't remember getting one. Actually, I haven't received one for a while.

 

[Dolphin]

Thanks for doing all that Frenchtulip and Dolphin! I was wondering how things were doing on the international and FB front.

I see on Sat, WPI Facebook page says they sent out a reminder to people to vote -- they have 3,700 members on FB and 15,000 on Causes yet only 2,700 or so votes. WPI thinks the e-mails are not being received by people for some reason and ar working on it. Anyhow, I hope this is just people not voting because WPI is pretty well-assured of a spot in the top 100 and that more people will come out to vote Round 2.

Yes, they highlighted this place http://www.facebook.com/l.php?u=htt...you/Screenshot2011-05-02at52842PM.png&h=45856 to check for messages.
I found loads of messages in there last night, mostly from groups but also from an old school friend from a couple of months ago.

I wonder how many people wouldn't have voted because they think the WPI is safe - it wasn't said much till the last day or two. The main people who would know are people who see the leaderboard - I'm not sure there would be many people who would get to the leaderboard but wouldn't vote (unless they have a problem). However, there may be people who voted but didn't make a big effort contacting family and friends for this reason.

Round 2 is only one week rather than 2 weeks for Round 1 - it will be interesting to see how many votes are needed; perhaps fewer votes rather than more votes will get the same position.

 

[Dolphin]

I've just posted on some yahoogroups that it's the last day of voting in Round 1 - I'm hoping that will wake some people from their slumber. I see it has prompted one of my non-US FB friends to try to vote (was surprised they hadn't voted before now).

I know it's not particulary important to get more votes but I'm hoping that if they do it this time, they'll vote for Round 2 as they'll know what is involved.

Perhaps people could do this in other places e.g. Facebook groups - I've quite a lot on.

 

[frenchtulip]

FWIW, I found out that I'm now a member of 105 groups (think they're all ME/CFS-type groups) and have 74 interests (all but a handful are ME/CFS - one has to "like" some pages to post on them) so posting requests on 150 or so looks like around the amount I did.

Anyone else got any feedback on successful/unsuccessful strategies? (I have little idea how much difference what I did on Facebook made - on most of the pages, it wasn't "liked" which makes me think that nobody on lots of the groups voted).

Any responses good/bad received from e-mailing local/regional/state or national groups?

One thing the CAA did not do when they voted for other charities was to leave messges asking for votes for the CAA in return. The WPI did a fantastic job of leaving messages, including the link to their voting page. I saw very, very few left by the CAA. The WPI also forged an alliance with the Florida Vision group by leaving multiple positive messages on the Florida Vision voting page. So, in Round Two, leaving messages asking for votes for the CAA would be a good thing for CAA supporters to do (and always include the link to the CAA voting page).

 

[Dolphin]

One thing the CAA did not do when they voted for other charities was to leave messges asking for votes for the CAA in return. The WPI did a fantastic job of leaving messages, including the link to their voting page. I saw very, very few left by the CAA. The WPI also forged an alliance with the Florida Vision group by leaving multiple positive messages on the Florida Vision voting page. So, in Round Two, leaving messages asking for votes for the CAA would be a good thing for CAA supporters to do (and always include the link to the CAA voting page).

Of course, with this, one has to be careful not to help groups pass your group(s) out - probably best to concentrate on ones towards the bottom in general.

 

[Dolphin]

I don't know how many ME/CFS groups I now belong to on Facebook. I don't know if my posts made any real difference, but one lady in an Ontario group let me know she had voted. I probably emailed between 100-150 organizations in other countries promoting the WPI. I don't think I heard back from a single one. Several groups in England have a close alliance with the WPI and probably voted because of that, not because of my emails or posts. The groups on Facebook are the most likely to vote, I think, because they are familiar with the set-up. I had the best luck with the swapping of votes for the CFIDS Association. I think I will do that again in Round Two. I think it's worth posting on ME/CFS groups on Facebook--U.S. groups and non-U.S. groups. You never know how many may have voted because of posts--even if they didn't "like" what was posted.

Hopefully, the WPI can stay in line to win $200,000 in Round Two and the CFIDS Association can win at least $20,000. The top 25 will win money. The competition will be keen, and I expect major voting alliances between music groups and the like.

Thanks frenchtulip.
Well done for all you did.
I did get a little feedback. Also I never went back to most groups I posted on.

Regarding the UK: although I would have thought there are lots of WPI supporters in the UK, I'm not sure how many UK groups have been that supportive.

I'm on a list (actually two but one is fairly inactive) for group leaders and I'm basically the only person plugging it. One person a few days ago said they wanted to vote except for the privacy issue but perhaps because of a bit of prodding, they voted. Another person said not to vote for the CAA. Apart from that, it's been very quiet. And if the group leaders haven't voted, it probably means they haven't passed it on to others.

I think for Round 2, more people need to contact non-US groups both through Facebook and other means of contact - I think there could be several thousand extra votes there with the right prodding.
And it probably has to be repeated several times that people outside the US can vote.

 

[Hope123]

I'm going to make a post specifically for international visitors to PR on the 'General' News page. Nothing particularly new but just to highlight the issue.

 

[beesknees]

Of course, with this, one has to be careful not to help groups pass your group(s) out - probably best to concentrate on ones towards the bottom in general.

Don't forget to leave a comment to vote for WPI 0r CAA. Once you voted for a charity you can leave as many comments as you want. So if you left a comment days ago you may want to leave another comment so people see it.

 

[Dolphin]

(Off-topic - kind of)

It's really jumped up quickly down the bottom - I remember telling somebody not so long ago (possibly over the weekend? end of the last working week?) that one could have less than 100 votes and be in top 100. Now it's 418. I think it may have only been something like 330 (?) in the last update 12 hours ago. I'd say some groups thought after the last update that they would be secure if they got to 400.

 

[SpecialK82]

Does anyone know if it's against the rules the sign up for multiple facebook accounts under different names, maybe different emails?

 

[justinreilly]

Does anyone know if it's against the rules the sign up for multiple facebook accounts under different names, maybe different emails?

It's definitely against Facebook rules to sign up for even one not using your real name. I'm sure it's against the Chase rules, though I haven't reviewed them lately.

 

[Dolphin]

5 of the top 10 in Chase Community Giving are partly or wholly for drum corps

We have very few drum corps in Ireland so I didn't know that "YOUTH EDUCATION IN THE ARTS" (#1)
is

TO SUPPORT THE DEVELOPMENT OF LIFE SKILLS IN YOUTH THROUGH THEIR PARTICIPATION IN THE PERFORMING ARTS. The Cadets Drum Corps The US Scholastic Band Association The Urban Arts Center of the Lehigh Valley, including Xcape Dance Company, the Lehigh Valley Youth Drumline and the Community Hand Drumming Experience

Also, until I looked at the logo, I didn't know what SCV (#8) was: SANTA CLARA VANGUARD BOOSTER CLUB. Logo says "Drum and Bugle Corps"

10 Blue Devil Parent Association

The training and development of students ages 7 to 22 in the area of performing arts. Most significant activities include the formation and operation of three drum and bugle corps who learn music, dance, and marching; the formationand operation of a winter guard twirling/dance program; the formation and operation of a brass wind symphony; the formation and operation of music training camps and clinics.

Then there is also:
2 DRUM CORPS INTERNATIONAL INC

7 GLASSMEN JR DRUM & BUGLE CORPS INC

While people in the US may feel some affinity with drum corps, it might be useful to point this out to people outside the US.

 

[frenchtulip]

Does anyone know if it's against the rules the sign up for multiple facebook accounts under different names, maybe different emails?

From the FAQ's of the Chase contest:
How many votes do I get?
Each person who Likes Chase Community Giving, receives 10 votes to cast as they see fit in Round 1. You can only use 1 vote per charity; but with hundreds of thousands of charities to choose from, finding 10 you like should be no sweat. In Round 2, each person receives 5 votes to cast on the charities competing in that Round. You can see how many votes you have remaining at the top of each page.

I think in the last Chase contest the officials deducted votes from charities when they suspected that Facebook accounts had been made up. I think that auditors probably get suspicious only if the name on the email account does not match the name on the Facebook account. But this is just my opinion.

 

[justinreilly]

While people in the US may feel some affinity with drum corps, it might be useful to point this out to people outside the US.

Noone in the US cares about drum corps except people in drum corps. They are just successfully banding together to get votes.

 

[Dolphin]

Noone in the US cares about drum corps except people in drum corps. They are just successfully banding together to get votes.

Ok, good to know. I didn't want to speak on how people in the US might feel while I consume a lot of media (TV/radio/newspapers/magazines/etc) from Ireland and the UK so would have an idea about attitudes in those countries.

 

[justinreilly]

Illness Groups

With 40 mins left in round 1, here are the other groups related to illnesses. (for some reason they don't list #100). I suggest we form some kind of alliance with them. Also, does anyone have an 'open line' of communication to WPI and CAA who can ask them if we can act as their agents to tell these groups that WPI and CAA themselves will ask people to vote for them?

Strategically, I would tell the higher up ones that we can agree that we (WPI and CAA and supporters) and their org will ask people to vote for each other during the entire contest. For the lower ranking ones, we can agree that we will 'advertise' for them for a shorter period- say a day or two, but they have to 'advertise' for us the whole time. That way we can get votes from more orgs.

13. Dogs for the Deaf
24. I Rhett Syndrome F
27. N Marfan F
44. FANCONI ANEMIA RESEARCH FUND
46. The National MPS Society
56. FLORIDA'S VISION QUEST
59. EPILEPSY FOUNDATION OF FLORIDA INC
85. Treatment Action Group (AIDS)
88. Guide Dog Foundation for the Blind
95. Cancer Care Services
98. Lustgarten Foundation
99. National MS Society

 

[Dolphin]

With 40 mins left in round 1, here are the other groups related to illnesses. (for some reason they don't list #100). I suggest we form some kind of alliance with them. Also, does anyone have an 'open line' of communication to WPI and CAA who can ask them if we can act as their agents to tell these groups that WPI and CAA themselves will ask people to vote for them?

Strategically, I would tell the higher up ones that we can agree that we (WPI and CAA and supporters) and their org will ask people to vote for each other during the entire contest. For the lower ranking ones, we can agree that we will 'advertise' for them for a shorter period- say a day or two, but they have to 'advertise' for us the whole time. That way we can get votes from more orgs.

13. Dogs for the Deaf
24. I Rhett Syndrome F
27. N Marfan F
44. FANCONI ANEMIA RESEARCH FUND
46. The National MPS Society
56. FLORIDA'S VISION QUEST
59. EPILEPSY FOUNDATION OF FLORIDA INC
85. Treatment Action Group (AIDS)
88. Guide Dog Foundation for the Blind
95. Cancer Care Services
98. Lustgarten Foundation
99. National MS Society

Some of them are interested in research and some specifically aren't. I thought the ones specifically interested in research might feel closest to us and what we were looking for (although I am confused as to what the WPI money is going for atm - I had read that the clinic couldn't use the charity money in Dr Deckoff Jones' blog - but thought I read something saying the opposite with regard to Chase Community Giving. I imagine when they say what the $500,000 will be spent on, it will become clear). Although then a problem with that was that some were for conditions that seem to affect and kill children so maybe they wouldn't feel as close to us. Also, perhaps the distinction I'm making makes less of a difference to the average voter who might like a charity that gives support services but still likes research (at board level or whatever, the difference might be more in focus).

 

[justinreilly]

Stategy

Thank you Frenchtulip, Dolphin and everyone!

Does anyone know what good strategies here would be. I assume we should band together with illnesses and also with the other top orgs that are not drum corps, like the Wolf and Wildlife Centers and Joyful Heart.

The main problem with banding together with other high ranking orgs is that the inability to monitor compliance makes it very hard to get votes from the other ones and there is a danger of pushing them ahead of us with our own votes. (this is much less of a problem with lower ranking orgs since we wouldn't be in direct competition with them) Does anyone have any idea of how to get around this and monitor/ensure compliance?

One way would be with an app. There may be too little time to get something together like this, but it would be extremely useful. (If we can't do it now, let's think about it for the future). The app would let you enter what orgs you wanted to vote for and what your 'favorite' org was. The app would vote for you and then log which orgs' supporters had voted for which other orgs. One problem with this would be the app would probably need access to personal info from the voter.

Your feedback please!

 

[Hope123]

Does anyone know if it's against the rules the sign up for multiple facebook accounts under different names, maybe different emails?

I think for the purposes of the contest, it is likely against the rules. One Facebook account per user although people have used tricks as I understand in certain situations to bypass this -- don't do this for Chase though -- we don't want to be disqualified.

However, contrary to what others say, I don't think there is a rule on Facebook that you have to use your true name or give true information on your account. I regard it as I would any other e-mail/ forum account where only one of my accounts has my true name. Not having true or having little info on my "play" accounts means less chance of identity theft and less chance of being bombarded by advertisers/ spam.

 

[Dolphin]

Good you're strategizing, Justin.
One thought I had looking through the lists was that there were quite a few wildlife/wild animal charities and then a few more charities dealing with domesticated animals. So "animal lovers" may use up their five votes in round #2 so might not be generally great to pair up with?