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

[WillowJ]

cool!

 

[anncavan]

Hi all,
Just a heads up, Dr. Lerner's foundation does nit meet the $1-10 million requirement. Not sure how it was included. Thanks to WillowJ for checking with me!
Ann
(Lerner patient and foundation volunteer)

 

[*GG*]

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.

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.

How does a person do this? Perhaps a thread should be started just for the "mechanics" of Facebook and perhaps another for wording to post on Facebook soliciting votes? Sorry, I get lots of email and only have so much time, with work etc.., so I need simplified protocol to help get more votes!

GG

PS If someone could email me simple directions, that would be helpful also, since this thread is getting to be very long with many posts everyday!

 

[justinreilly]

Nielk, that last point of mine wasn't aimed at you specifically, just thought it was interesting/worth posting.

The bit in bold is my point. In my last substantial post, I was just expressing my frustration at some people with ME/CFS. I've been involved in asking for money from people with ME/CFS on the internet and people would say they have no money - it was likely true for some but hardly true for all who said it/didn't donate (and don't donate to the cause in general - although I think a broader group are now donating with the WPI). I just get frustrated that some people with the illness won't do some things for the cause sometimes.

I can understand people not giving for research. I barely give anything. I don't have enough money to take care of myself and most of us are in that situation. I support WPI, but honestly, giving our own last dimes to research now isn't that compelling an idea to me. It usually takes $Billions to make substantial headway on research on a disease. By the time we get to tens of millions we'll all be homeless if we're all giving away our rent money. What we really need is for NIH to do it's job and actually fund the disease in the $ hundreds of millions every year. And we need healthy people to contribute most of the private money.

So we need to reach out to healthy people and most of all contribute to effective advocacy orgs who will use the thousands we give them to get potentially hundreds of millions in NIH money doled out. Too bad there are not any really obvious candidates for advocacy orgs to give money to. Hopefully the new WPI advocacy org- Aninda, or whatever it's called, will be that one.

Anyway, re the contest, I think the fact that WPI and CAA are almost certainly going to get to round 2 even if they don't get one more vote, is the reason people aren't getting more fired up to vote. I think they will in the second round when so much cash is on the line. I for one will go ballistic contacting everyone in my email address book and all friends/contacts on social networks as I sure we all will. So, I wouldn't get too frustrated yet.

But I think it is good to keep brainstorming. Anyone have any more creative ideas on how to get those reluctant 'friends' to vote? I was thinking of doing some kind of 'contest' or gimmick among my friends to create more interest. say, if wpi and caa both place in top three (or five or whatever) then whoever of my friends votes and reports back a list of 20 of their friends who voted get to split $1 or 2K that i will give to them when I get better! or if they win I will do some stunt like shave my hair into a mohawk and dye it green or something. Anyone have any good/ fun/ funny stunts I could do or any other creative ideas on getting votes?

Who knows about advertising and marketing and can give us a good idea on really breaking thru the clutter and getting people to actually vote?

More rambling: I think pretty much every facebook app makes you give them access to your friend list. I think they usually just use it to "proposition" you every so often to invite your friends to sign up for the app, usually by rewarding you somehow (like giving you points in a game app). Everyone (including me) signs up for every dumb game like mafia wars even though they want your 'friend list' and info. people complain about it but i've never really heard of people refusing to use apps because of this. So I wonder why people would care in this situation. Maybe because they're just signing up for FB and aren't familiar with it?

You can opt to not give fb (or hide it from view if you do give it to them) your phone number and address (and hide your email) I'm pretty sure, so I think you can limit what the apps find out to just who your friends are. Is that right? Does anyone know more about this stuff off-hand? if it's just who your friends are, I don't think it's that big a deal, considering we're trying to get hundreds of thousands of dollars. Alright; I'm done blabbering.

 

[WillowJ]

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.

How does a person do this? Perhaps a thread should be started just for the "mechanics" of Facebook and perhaps another for wording to post on Facebook soliciting votes? Sorry, I get lots of email and only have so much time, with work etc.., so I need simplified protocol to help get more votes!

GG

PS If someone could email me simple directions, that would be helpful also, since this thread is getting to be very long with many posts everyday!

sorry, I was chit-chatting here

To change your facebook settings for your posts, go to your own profile page and look in the top-right corner for the "Account" link with the drop-down arrow next to it. Click there (I don't think you have to hit the arrow; the Account part should be fine) and select "Privacy Settings"

A new screen will load. Look for the part with the lock icon that says, "Sharing on Facebook". Hidden near the bottom of that section in small blue print is a link with a pencil icon that says, "customize settings". Click this link.

A new screen will load. Change "posts by me" to "Friends of Friends" and your relatives' friends will be able to see your posts, if your relatives like or comment on them (or the friend sees your name on one of your relatives' walls and clicks through to your profile), or if you tag your relatives or post on their walls.

While you are on this screen, check your other settings, because Facebook has this annoying and intrusive habit of creating new features and opting you in to them.

Now, find the link at the top left to go "back to privacy".

You will return to the previous screen.

At the bottom left, find the link under Apps and Websites to "edit your settings" and click on that.

A new page will load. Ensure that game and app activity is also set to "friends of friends" so that your Chase posts will be available to friends of friends. Check your other settings while you're there.

If you want to change these back after the promotion, bookmark this post or email it to yourself so you can find the instructions again (unless you will remember how, after doing it once). Of course, Facebook might change how you get to these again. If so, ask again and someone will help sort it out.

 

[Dolphin]

RE: people donating to research.
I did say I accept some people have little or no money. But I see people spending tens of thousands on their illness across their illness not giving anything (from what I can make out). They may think they have no money and they may indeed have less money than when they were working. But it looks to me than many do have some money. Anyway, as I say, more are giving now (through the WPI) than have been in the past. But I still reckon that around the world, a lot more could be raised. With so many million affected, there is potential for a lot to be raised. And research doesn't have to be a cure to be useful.

I agree that healthy people could contribute a lot either through donating themselves and/or fundraising (for example). But I'm not sure how focused a lot of people are on encouraging people they know to fundraise, etc. Perhaps there is a bit more of a focus now with the WPI.

Anyway, I was just saying this in the context of a lot not taking part in this competition which costs them nothing financially except a very small amount of effort. Last year, PANDORA only just made it with 1600 votes which included some bonus votes (i.e. less than 1600 voted). And they cover lots of conditions. The enthusiasm of the WPI supporters this year has been great.

 

[Tuha]

RE: people donating to research.
I did say I accept some people have little or no money. But I see people spending tens of thousands on their illness across their illness not giving anything (from what I can make out). They may think they have no money and they may indeed have less money than when they were working. But it looks to me than many do have some money. Anyway, as I say, more are giving now (through the WPI) than have been in the past. But I still reckon that around the world, a lot more could be raised. With so many million affected, there is potential for a lot to be raised. And research doesn't have to be a cure to be useful.

I agree that healthy people could contribute a lot either through donating themselves and/or fundraising (for example). But I'm not sure how focused a lot of people are on encouraging people they know to fundraise, etc. Perhaps there is a bit more of a focus now with the WPI.

Anyway, I was just saying this in the context of a lot not taking part in this competition which costs them nothing financially except a very small amount of effort. Last year, PANDORA only just made it with 1600 votes which included some bonus votes (i.e. less than 1600 voted). And they cover lots of conditions. The enthusiasm of the WPI supporters this year has been great.

I have the same impression. The problem of these discussions is that always only the patients who have really problem with money follow these discussions and they are touched even if you say 100 times that its not about them. I now some patients and almost noone support research or other ME/ cfs activities. A lot of them could at least send some money but if you try to encourage them, they say -"we dont have enough money". Then you are in a coffe and they take the most expensive one....But I think its in generelly - the people dont like to leave their money. I can tell you one example - I was working on a ministery and on the end of the year everyone got a premie 1000 EUR. We were in a pub with my 15 collegues and we were talking about humanity and everyone had a lot of words...I was sometimes working for a NGO which is really famous in my country and everyone like it. So next day I just said to my collegues - here is a bottle, if you want, put there some money and i will send it to the organisation - do you know how much money was there on the end of the day? 5 EUR - so 15 people got 15 000 EUR, it was christmas time and they were just able to donate 5 EUR.
Someone wrote it here that research needs billions USD to move - I agree and also dont agree. Look at WPI - if they will confirm XMRV, they were able just with 3 mil. USD do such a big step - sometimes you dont need so much to move.
I think we have to start to understand that we have to take responsibility to our hands but I think we are still waiting for something. I think that its disappointing that only 2300 voted for WPI - if we will say that in average every patient brought 3 friends to vote - there are only 600 patients who voted. there was such a big campaign and publicity, the people contacted so many cfs organisations, forums, support group, there are even tradiction to other languages..... We are talking about at least 17 mil. patients - ok, there is a big % who dont know the diagnose, some dont have any energeny - but I think there is still huge amount of some millions people who could support ME/ cfs activities. somewhere is a mistake.
i understand the people are desperate - but for example with that "What have you done for me today" campaig last year we could see that some activities can work - that activity joined maybe a bit more than 1000 people. i think everything need better coordination and patients have to start to understand that they have to join me/cfs activities if they are able

 

[Dolphin]

Good points Tuha. Like you say, there may be less than a lot less than thousand people with ME/CFS/families with ME/CFS who have actually voted for the WPI because of people bringing in other people of one sort or another.

I don't think it was plugged: the CAA have made a short video for the competition: http://www.youtube.com/watch?v=NpbWknMYw6s

 

[Dolphin]

(Junk)

Weird (suspicious?) voting:
Arcadia Educational Foundation were 2 votes ahead of the CAA last night on the leaderboard; in the next leaderboard, this morning, they are 290 ahead of them i.e. they got a large amount of votes for them in a short space of time (I think it might have been 305 but not definite). However, since the last leaderboard was put up, over 6 hours ago, they have only got 2 more votes (not 2 more than the CAA, just 2 more votes). Perhaps it is to do with school hours. Anyway, unlikely to make much of a difference in round 1.

 

[Dolphin]

Frank's video explaining how to vote is available in Dutch

Frank's video explaining how to vote is available in Dutch:
http://www.youtube.com/watch?v=Svq1gFHQa_k&NR=1

 

[Dolphin]

(Junk Junk)

I was just wondering whether there would be a curve that would fit the votes.
This doesn't show much but first I started looking at the bottom of each page:

20th: 678
40th: 336 (339 is 1/2 of 678)
60th: 233 (226 is 1/3 of 678)
80th: 164 (169.5 is 1/4 of 678)
100th: 122 (135.6 is 1/5 of 678)

 

[Purple]

A question someone asked me to which I cannot seem to find a clear answer in the official rules:
Do the votes from the first round carry over to the second round or does it go back to zero votes and voting starts again from scratch in the second round?

 

[Hope123]

I too occasionally am frustrated with what little people are willing to do but then someone comes through on something and I am encouraged by it.

It should be remembered that even for big well-funded surveys and studies (medical, political, marketing, etc.), that the response rate of people filling out/ answering surveys is surprisingly low -- usually less than 50% -- unless some prize, incentive, etc. is involved. I remembered a long time ago, I surveyed 100 or so students on a matter (no prize involved) and got a 50% response rate and everyone was surprised by that.

In terms of contributing, usually what works for me is designating a certain amount from my account to be deducted and given to a charity ahead of time. This is how I contributed to my retirement fund and funds to charities each month before I became ill with CFS. At the end of the year, I'd end up donating several hundred to charities but because I never had the money in the first place (as it was given to the charity right away), I didn't really feel like I "lost" money or felt deprived.

 

[Dolphin]

A question someone asked me to which I cannot seem to find a clear answer in the official rules:
Do the votes from the first round carry over to the second round or does it go back to zero votes and voting starts again from scratch in the second round?

I don't know for definite but apart from a "feeling" that it's from scratch, a couple of things suggest to me it's likely to be the case:
(i) I think they would have explicitly said that votes are carried forward if that was the case so that people would continue to make an extra effort;
(ii) The "Big Idea" part of it which is what people are supposed to be voting on I think (as they see it) - if votes were carried forward, then a lot of the votes weren't on the "big idea".
But people could always contact and ask explicitly.

 

[Dolphin]

I too occasionally am frustrated with what little people are willing to do but then someone comes through on something and I am encouraged by it.

It should be remembered that even for big well-funded surveys and studies (medical, political, marketing, etc.), that the response rate of people filling out/ answering surveys is surprisingly low -- usually less than 50% -- unless some prize, incentive, etc. is involved. I remembered a long time ago, I surveyed 100 or so students on a matter (no prize involved) and got a 50% response rate and everyone was surprised by that.

In terms of contributing, usually what works for me is designating a certain amount from my account to be deducted and given to a charity ahead of time. This is how I contributed to my retirement fund and funds to charities each month before I became ill with CFS. At the end of the year, I'd end up donating several hundred to charities but because I never had the money in the first place (as it was given to the charity right away), I didn't really feel like I "lost" money or felt deprived.

Yes, people making a special effort gives me a boost too - and there have been quite a few examples in this thread.

I've heard quite a few people say with the monthly donations, they adjust so then don't notice it. "Once off hits" feel much more. [Repeat: I know some people are in a tough financial situation and don't expect everyone to donate].

Saying that, I don't think it's anything close to 30% of people with ME/CFS who have seen this who have responded - I know that wasn't your explicit point, but I wanted to mention percentages. I would say at most 10% of FB users who have seen a request, but I'd say it's probably a lot less than that. But it may be a lot more in the US: I have avoided picking up FB friends (have around 100 requests outstanding) but looking at my FB friends and their votes (one can see from Activity --> My Activity) it's still the US contacts who are voting, the UK etc ones who are not). Maybe other people could check their FB friends and see what the numbers suggest. We're talking serious money that is up for grabs so a little research is worthwhile. As I think I and others have said, if we get people with ME/CFS to vote this time, they should be much more likely to vote the next time.

BTW, got my three siblings to vote already and my mum has agreed to set up a FB account so she can vote.

 

[Dolphin]

Data on votes of people's FB friends broken down by country

Here are mine:

US (10): Yes: 6 (60%); No: 4 (40%)

Europe (13): Yes 0 (0%); No: 13 (100%).
11 of these 13 are in Great Britain and Ireland i.e. the FB sites they visit are English language ones.

More than half of the European ones I would say are on FB quite a lot.

I would not say my sample is representative - nearly all of my US contacts hold some sort of positions of responsibility in terms of running ME/CFS groups either online or in the "real" world.

For round 2, people will probably get private messages from me - perhaps immediately for the people who didn't vote in Round 1 so they have plenty of time.

-------
Apart from me, I haven't seen many posts on it on non-US FB sites, yahoogroups, etc. Perhaps other people should highlight it - I've highlighted it quite a lot (and on lots (!) of different FB groups).

 

[Dolphin]

Instructions in Spanish

There are instructions in Spanish on the FB group, "Fibromialgia y Sndrome de Fatiga Crnica" (April 22).

 

[Dolphin]

I'm trying vote swapping on ME/CFS forums!

For what it's worth, I've just posted this to a few forums.
I thought I'd try it as:
(i) it's another chance to plug the competition
(ii) I want people with ME/CFS to be voting as I feel a) there's a better chance of them voting in Round 2 b) They might ask other people c) They're unlikely to "defect" and only vote for non-ME/CFS charities in Round 2.

---------

Any non ME/CFS charities you like? I'll vote for them in Chase Giving if you'll vote

I know other people can have other causes close to their hearts apart from ME/CFS. I have 7 votes left.

I'll vote for one of the ones below if somebody who hasn't voted so far votes for the WPI and/or the CAA.

The ones in the bottom 50 are probably the most vulnerable to not getting in the top 100 i.e. missing out on $25,000 and also missing out on Round 2 when another $2.5m will be given out.

http://apps.facebook.com/chasecommunitygiving/

The first number is the position.
The number at the end is the number of votes.
On the site, one can click on the name to get more info.


1 DRUM CORPS INTERNATIONAL INC Indianapolis, IN 4,050
2 YOUTH EDUCATION IN THE ARTS Allentown, PA 3,987
3 INTERNATIONAL WOLF CENTER Ely, MN 2,967
4 Whittemore Peterson Institute for Neuro-Immune Disease Reno, NV 2,381
5 Joyful Heart Foundation New York, NY 2,198
6 SCV Santa Clara, CA 1,884
7 The Blue Devils Concord, CA 1,409
8 WILDLIFE CENTER OF VIRGINIA Waynesboro, VA 1,270
9 ARCADIA EDUCATIONAL FOUNDATION Arcadia, CA 1,257 10 GLOBAL KIDS INC New York, NY 1,187
11 VINEYARD COMMUNITY CENTER Westerville, OH 1,168
12 WINTER GUARD INTERNATIONAL INC Miamisburg, OH 1,116
13 WILDLIFE WAYSTATION Angeles National Forest, CA 1,094
14 DOGS FOR THE DEAF INC Central Point, OR 1,035
15 MUSIC FOR ALL INC Indianapolis, IN 984
16 Petfinder.com Foundation Tucson, AZ 815
17 The CFIDS Association of America Charlotte, NC 767
18 AMIGOS Houston, TX 763
19 MENC: The National Association for Music Education Reston, VA 760 20 NORFOLK BOTANICAL GARDEN SOCIETY Norfolk, VA 710
21 Asha for Education New York, NY 683
22 SPCA of Westchester Briarcliff, NY 674
23 Break the Cycle Los Angeles, CA 645
24 JEFFERSON COUNTY PUBLIC SCHOOLS OUTDOOR EDUCATION LAB SCHOOLS FOUN Arvada, CO 611
25 CROSSMEN DRUM AND BUGLE CORPS OF DELAWARE COUNTY PA Voorhees, NJ 610
26 CGAUXA St Louis, MO 554
27 NJ SEEDS Newark, NJ 553
28 PARENT-CHILD CENTER INC Riviera Beach, FL 497
29 THE ARBOR SCHOOL Houston, TX 496
30 One Heartland Inc. Milwaukee, WI 473
31 The Anti-Cruelty Society Chicago, IL 458
32 JCC ROCKLAND INC West Nyack, NY 457
33 FARF Eugene, OR 454
34 SPARTANBURG CHARTER SCHOOL Spartanburg, SC 440
35 GLASSMEN JR DRUM & BUGLE CORPS INC Maumee, OH 435
36 GENDER SPECTRUM CHARITABLE FUND Orinda, CA 431
37 CASS COMMUNITY SOCIAL SERVICES INC Detroit, MI 419
38 International Rett Syndrome Foundation Cincinnati, OH 412
39 SOAR CHARTER ACADEMY San Bernardino, CA 403 40 CVLS Chicago, IL 388
41 San Diego Community Housing Corporation San Diego, CA 375
42 Chicago Coalition for the Homeless Chicago, IL 363
43 National MPS Society, Inc. Durham, NC 356
44 Water Missions International Charleston, SC 345
45 Save-A-Pet Grayslake, IL 344
46 The Lustgarten Foundation Bethpage, NY 341
47 IMMIGRANT SOCIAL SERVICE INC New York, NY 333
48 Autism Society of America, INC. Bethesda, MD 315
49 EPILEPSY FOUNDATION OF FLORIDA INC Miami, FL 311 50 CCF Alexandria, VA 304
51 TWP Fort Collins, CO 289
52 PET HELPERS INC Charleston, SC 281
53 BLACK ENSEMBLE THEATER CORPORATION Chicago, IL 275
54 Elephant Sanctuary Hohenwald, TN 268
55 YouthBuild Philadelphia Charter School Philadelphia, PA 258
56 CENTER FOR CONSERVATION BIOLOGY INC Williamsburg, VA 257
57 Charleston Animal Society North Charleston, SC 254
58 CRUSADERS SENIOR DRUM & BUGLE CORPS INCORPORATED Methuen, MA 243
59 MT HOOD KIWANIS CAMP INC Portland, OR 243 60 WBGO Jazz 88.3FM Newark, NJ 240
61 NATIONAL MULTIPLE SCLEROSIS SOCIETY Oakhurst, NJ 239
62 Binder Park Zoo Battle Creek, MI 238
63 The Children's Shelter San Antonio, TX 235
64 A.I.F. New York, NY 232
65 GRASSROOT SOCCER INC Norwich, VT 231
66 WOMEN MAKE MOVIES INC New York, NY 223
67 The Akshaya Patra Foundation USA Stoneham, MA 223
68 Children of the Night Van Nuys, CA 223
69 Peace Over Violence Los Angeles, CA 222 70 SYMPHONY SILICON VALLEY San Jose, CA 218
71 Wheeling Symphony Orchestra Wheeling, WV 210
72 Baltimore Child Abuse Center Baltimore, MD 209
73 TIGER STRIPES EXOTIC ANIMAL SANCTUARY INC Quitman, GA 195
74 Resurrection Project Chicago, IL 193
75 HISTORIC CHARLESTON FOUNDATION Charleston, SC 192
76 The Shakespeare Center of Los Angeles Los Angeles, CA 189
77 Junior Achievement of Northern Indiana, Inc. Fort Wayne, IN 182
78 CRISIS MINISTRIES Charleston, SC 179
79 Florida's Vision Quest Orange City, FL 179 80 THE LITTLE LIGHT HOUSE INC Tulsa, OK 174
81 Shelter Network Burlingame, CA 174
82 PROJECT SAGE HORSE RESCUE INC Valley Stream, NY 171
83 Kansas City Repertory Theatre, Inc. Kansas City, MO 170
84 IWS Chicago, IL 168
85 PSLS Rockford, IL 164
86 CCS Fort Worth, TX 161
87 NHLI Arlington, VA 160
88 GUIDE DOG FOUNDATION FOR THE BLIND INC Smithtown, NY 159
89 Gulf Coast Women's Center for Nonviolence Biloxi, MS 158 90 SOUTH CAROLINA COASTAL CONSERVATION LEAGUE INC Charleston, SC 150
91 TREHAB CENTER INC Montrose, PA 139
92 SANDY PESZYNSKI BREAST CANCER FOUNDATION INC East Hampton, CT 138
93 MobileMed Bethesda, MD 136
94 SCA Charleston, SC 132
95 FOCUSDRIVEN -- ADVOCATES FOR CELL-FREE DRIVING Spring Lake, MI 131
96 EHLERS DANLOS NATIONAL FOUNDATION Gadsden, AL 130
97 Cooperative Ministry Columbia, SC 130
98 SafePlace Austin, TX 129
99 CPE Washington, DC 127
100 DETROIT INTERNATIONAL JAZZ FESTIVAL FOUNDATION St Clair Shores, MI 127

 

[Dolphin]

I'm trying vote swapping on ME/CFS forums!

Nobody has contacted me so maybe this is a flop. Although at least it gave me a chance to plug it again, in a different way.

 

[Hope123]

This thread still has the words 'US' on it and one thing I will do when the next round comes up is to post a thread with the word "International" in it to alert people who aren't US-based.

As long as people perceive the charities to only benefit US residents (I think many people don't believe this and if they do, it's not too hard to convince them that it's the XMRV discovery that has re-energized the CFS research field internationally) or that only US residents can vote (not true), they're not going to do it.

My thought is to contact every known ME/CFS group out there internationally (something of course I won't be able to do by myself) and ask them to notify their members of this item. I am certain some groups will not participate for reasons of competition or feelings that this won't affect their members but I am optimistic that some will.