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

[Dolphin]

Dolphin, you can check financial info for the WPI at www.guidestar.org. Do a search for the Whittemore Peterson Institute and then click on 990 forms from IRS. You have to register to access the info. I think the WPI has probably been very careful about the financial requirement; they were in the last competition with the smaller nonprofits and withdrew, I think, because their operating expenses were actually over $1 million. I haven't heard that the CAA is entering. If so, their info would also be at guidestar and is on their website at www.cfids.org.

Thanks for instructions. All it seems to have (with a free account) is the 2009 figures - not sure if they are relevant.
For 2009 the income was $1,211,924.
The previous year it waa $1,854,030.

For the CAA,
For 2009 the income was $1,161,591.
The previous year it waa $1,918,102.

 

[Andrew]

FWIW, at the link I posted is a search window. I'll post it again. http://apps.facebook.com/chasecommunitygiving/

What I don't know is whether this narrows it down to only those who are eligible.

 

[Dolphin]

FWIW, at the link I posted is a search window. I'll post it again. http://apps.facebook.com/chasecommunitygiving/

What I don't know is whether this narrows it down to only those who are eligible.

As I tried to say: http://forums.phoenixrising.me/show...FS-non-profits&p=171759&viewfull=1#post171759 I find it difficult to believe that some of the CFS support groups that showed up had a turnover of over $1m so I don't think it narrows it down to only those eligible.

 

[frenchtulip]

As I tried to say: http://forums.phoenixrising.me/showt...l=1#post171759 I find it difficult to believe that some of the CFS support groups that showed up had a turnover of over $1m so I don't think it narrows it down to only those eligible.

Dolphin, I agree.

Although I don't know that they are participating in the Chase contest, I just checked the www.cfids.org website for their financial info. The latest 990 is for 2009. There always seems to be at least a year of lag time in what is available online. The deadline for filing tax info in the U.S. for the previous year is usually April 15th (April 18th this year). So 2009 may be the latest year available online. If you want to be dead certain, you could contact the WPI for their very latest info. I've had good luck getting responses from them in the past.

 

[omegaman]

What will Phoenix Rising be doing to help the WPI win?

 

[frenchtulip]

I am planning to start sending the email info from the WPI about the Chase Contest to organizations today. There are only four days until the contest begins and we need to get the word out and hopefully get the WPI to the top of the leaderboard shortly after the voting begins. This may be the only time I'll have this week to spread the word. I plan to forward the WPI's email and ask the organizations if they can post it on their website, on their Facebook account if they have one, and/or send out a mass email to members. Dolphin, I'm thinking I can take the first 15 organizations on the list you found; that will be organizations under International and Australia. I won't start for several hours so if you see this, please let me hear from you if you have any objections to my plan (or from anyone else who may see a problem with my plan). Thanks.
http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS

 

[Dolphin]

I am planning to start sending the email info from the WPI about the Chase Contest to organizations today. There are only four days until the contest begins and we need to get the word out and hopefully get the WPI to the top of the leaderboard shortly after the voting begins. This may be the only time I'll have this week to spread the word. I plan to forward the WPI's email and ask the organizations if they can post it on their website, on their Facebook account if they have one, and/or send out a mass email to members. Dolphin, I'm thinking I can take the first 15 organizations on the list you found; that will be organizations under International and Australia. I won't start for several hours so if you see this, please let me hear from you if you have any objections to my plan (or from anyone else who may see a problem with my plan). Thanks.
http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS

Think you mean, Tuha. I can't commit to anything as have a pile of work. Although I imagine as things get going I will get sucked in (by my own enthusiasm rather than being forced) and start posting it in various places.
Best of luck.

 

[frenchtulip]

Thank you, Dolphin, you are so right. I did mean Tuha.

 

[Tuha]

I am planning to start sending the email info from the WPI about the Chase Contest to organizations today. There are only four days until the contest begins and we need to get the word out and hopefully get the WPI to the top of the leaderboard shortly after the voting begins. This may be the only time I'll have this week to spread the word. I plan to forward the WPI's email and ask the organizations if they can post it on their website, on their Facebook account if they have one, and/or send out a mass email to members. Dolphin, I'm thinking I can take the first 15 organizations on the list you found; that will be organizations under International and Australia. I won't start for several hours so if you see this, please let me hear from you if you have any objections to my plan (or from anyone else who may see a problem with my plan). Thanks.
http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS

Hi frenchtulip,
Ok, so i will take from Canada to Italy - So if someone is motivated to do it, he can start from Malta. Its good to write it here, because then we will not do the same thing. Frenchtulip, can you send me the letter which you will send to the organisations - my english is not so good. the organisations good write us back if they will support it.

 

[frenchtulip]

Okay, I just PM'ed you, Tuha. I have finished through Australia. Since you are taking Canada through Italy, I have time left and will take Malta through South Africa. I guess I'll just go ahead and send my message in English to non-English speaking countries and hopefully they will have someone who can translate the message.

I've finished through South Africa and will take the UK.

 

[Tuha]

thanks frenchtulip. i will try to do it today or tomorow.
I have one question - will we vote only for WPI or also for other ME/cfs organisations? are there other organisation who will participate in the competition?

 

[Andrew]

The first time someone in this forum tried to get people to vote for CFS research, it was a big failure. I think only 12 people voted. One of the biggest problems was the lack of facebook accounts. Patients just didn't have them. Patients didn't trust Facebook with their personal information. I was one of them. Now I'm on facebook, and I've never had a problem being there.

If Facebook is your issue, sign up for a free email account someplace and use it just for Facebook. Maybe ask for help here finding one. Because this Chase charity is a big deal. The research and WPI rises and falls based on how much money they have. If they get in influx of money from Chase, they can temporarily broaden their research until it's gone. If they don't, the research that would have covered never happens.

Here is a chance for all CFS patients get lots of money for our research. Isn't it worth the effort of getting a Facebook account right now, so you can vote. Isn't it worth going for the largest prize. Please don't wait until later or next time. Please get started now.

 

[Sasha]

If Facebook is your issue, sign up for a free email account someplace and use it just for Facebook.

Great point, Andrew. I have a separate free Yahoo! email account that I use for anything I think might generate spam. I also used it to set up a Facebook account, specifically for some PR project that required Facebook. Because I have privacy concerns with Facebook I gave no genuine personal information at all (I can't remember if anything was asked for but in such circumstances I just make up a birthday, change my gender, etc. etc.). It's not even my real name on there!

Making a new email account only takes a few minutes, as does setting up a Facebook account. It's easily well worth it to vote for WPI and/or the CAA. There's a huge amount of money at stake.

Only 12 people, yikes. Anyone who has time to post a message on the forums even as short as this one I'm writing could have got a new email account and a Facebook account in the same time! No reason for all thousand of us not to do this.

 

[frenchtulip]

I have one question - will we vote only for WPI or also for other ME/cfs organisations? are there other organisation who will participate in the competition?

Tuha, I will vote for any ME/CFS organization in the contest. But if there are no others besides the WPI, I plan to cast one vote and then reserve the rest of my votes (if I'm allowed to do that) until I see how the leader board is shaping up. My bias is toward medical research, so I'll see which organizations I would like to support with the rest of my votes.

 

[Dolphin]

Is there a bonus vote this time? As I said before, if there is, a system should be set up so that people are paired with others so this can be maximised - it can mean, in effect, double the votes.

 

[frenchtulip]

Dolphin, it seems there are no bonus votes this time--just 10 in the first round for 10 different organizations and five in the second round for five different organizations.

Just received an email from the CFIDS Association. They are participating in the contest, so I'll be voting for both the CFIDS Association and the WPI.

 

[Dolphin]

Dolphin, it seems there are no bonus votes this time--just 10 in the first round for 10 different organizations and five in the second round for five different organizations.

Thanks frenchtulip. My guess is that the bonus votes weren't used well last time - there were, IIRC, 1600 or so votes for PANDORA but I reckon more than 800 voted (just a hunch). I thought a lot more would - I posted on lots of Facebook group pages and found it a bit frustrating how slowly the votes went up.

I'll be voting for both like you.

 

[*GG*]

Please visit this thread:

http://forums.phoenixrising.me/showthread.php?11117-Asking-for-

If you have just a little more time/energy for advocacy!

Thanks in advance!!

GG

 

[jace]

For free email accounts here's another link. http://email.about.com/od/freeemailreviews/tp/free_email.htm - warning, nasty animated smileys at the top of the page so scroll down if it bothers you like it does me.

When you have signed in to facebook, go to this page http://www.facebook.com/ChaseCommunityGiving and 'like' it. Then either put Whittemore Peterson or whatever in the search box, or use this link https://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo to get to the voting page.

Warning if you are on a Mac, Safari doesn't like facebook apps at all, and in Firefox I had to change my security settings (Firefox-preferences-privacy-accept third party cookies). Since I usually surf in Safari, and just use Firefox for Chase and Causes, I'm not worried about the settings, but if you use Firefox all the time, don't forget to uncheck that box accepting third party cookies before you go on to commercial sites.

Here's a link to the rules http://apps.facebook.com/chasecommunitygiving/rules

We have thirteen days and eight hours, and can vote once for each charity (total 10 votes a day in this round) every 24 hours. Let's tell all our friends!

Update: WPI in second place! Vote Vote Vote!

 

[Sasha]

Thanks for the instructions, jace - I had got stuck on that "like" business - but it's not voting every 24 hours is it? I thought we just had ten votes to cast before 4 May, for up to ten different charities.

Either way, get voting, everybody!