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

[jace]

Two days till kick-off, and there's some great tips on how to help the WPI win the funds it so desperately needs and deserves here http://www.mecfsforums.com/index.php/topic,6787.msg86708.html#msg86708 That's page 9 of the thread, and on page 10 there is a downloadable poster and tear-off strips that were welcomed with open arms at my two local, busy charity shops. The strips are designed to be pinned up with the poster on a notice board, and for window display it might be better to cut them out into cards.

There's also a flash button code, to embed in websites, and other materials for us to use.

Chase have added a new prize, on top of the $500,000 top prize we know about. It's half a million more, for the best "big idea" in the contest. The WPI have submitted their entry to that as well.

This funding could make all the difference to the hunt for an understanding and cure for us. Please pull out all the stops on this. We can win!

Here are the poster .pdf and a gif of the button. More materials available on the link I give above. Alternatively, they are available here: http://www.filefactory.com/f/074b5055549d2650/

 

[jace]

If you don't want to compromise your information by allowing Chase in to your facebook account, or if you're not on facebook at all yet, make an account with a dedicated email. You don't have to do anything other than vote in Chase with it. Here's what you do.

1) Create a new free email account to use with facebook so there is no chance of compromising your existing email account. There are loads of suppliers, hotmail, yahoo and gmail are the biggest.
http://email.about.com/od/freeemailreviews/tp/free_email.htm

2) Create a Facebook page. You need a first name and a last name, but it does not have to be your real first and last name. If Facebook requires info you don't want to give, just make up a fictional answer. Just make sure you give a working email address, because they will verify that.

 

[Sasha]

I would add to jace's message that Chase have been doing (asking Facebook for?) some checks, I think, and that they find accounts where the email doesn't match the name suspicious, and accounts that don't have much activity or many friends (which would be mine, unfortunately, since I don't use Facebook and only set up an account to vote for things like this!).

 

[Dolphin]

(Repeat) Contact local/state/regional/national/international groups

(Repeat)
With only 13 hours to go to the opening of voting, if people are looking for something to do, one thing would be to write to local/state/regional/national/international groups and ask them to highlight it e.g. on their Facebook page and/or website and/or by e-mail and/or in other ways.
I don't think it matters if the same group gets more than one of such messages.

 

[helen41]

I've been trying to take a break from illness (hard to do), and haven't been involved with the forum much, but I have been preparing for this. I have been voting for others like a mad thing and I am up to speed on the Bring on the Votes contest forum. My goal is 100 votes tomorrow. I don't know if I can do it, but I'm throwing down the gauntlet. Anyone up for a race?

 

[Dolphin]

I've been trying to take a break from illness (hard to do), and haven't been involved with the forum much, but I have been preparing for this. I have been voting for others like a mad thing and I am up to speed on the Bring on the Votes contest forum. My goal is 100 votes tomorrow. I don't know if I can do it, but I'm throwing down the gauntlet. Anyone up for a race?

Brilliant, helen41.
Hopefully others will take up the challenge.

 

[Dolphin]

If anyone has time, perhaps they could have a look around and see what techniques other groups have planned/are mentioning on their Facebook pages/on their websites, particularly charities who did well the last time e.g. top 20 (some may do a lot better this time as they weren't that focused for all of the voting period). Just an idea if anyone looking for ideas.

 

[Dolphin]

CFIDS Association of America's "BIG IDEA" for Chase Community Giving

http://on.fb.me/itklJE
i.e.
http://www.facebook.com/notes/the-c...at-midnight-edt-please-vote/10150260426630539
(150 word limit)

In spite of its silly-sounding name, chronic fatigue syndrome (CFS) is as
disabling as cancer, multiple sclerosis and late HIV disease. As many as 17
million children and adults around the world have CFS, and we still don't
understand its causes. To end the suffering CFS inflicts, the CFIDS
Association of America is building a critical mass of rigorous research that
validates the biological basis for CFS and leads to better ways to diagnose
and treat it. We're putting research first to achieve the vision of a future
in which the life-altering disability, stigma and isolation of CFS no longer
exist. Your vote will help us award grants to support new research studies
exploring diagnostics and treatments; expand our SolveCFS BioBank with more
samples and clinical information on patients and healthy volunteers; and
build a data-sharing platform to help researchers aggregate and analyze
information using powerful bioinformatics tools. Based in Charlotte, NC, our
work has worldwide impact.

 

[SpecialK82]

Are others getting a message when getting into the Chase FB page saying that you have to change your setting from a secure site (https) to an unsecure site (http) to get in?

I did not get this message the first Round, and it's frustrating. I don't understand if it is just to allow Chase to access your FB account - if feels more like they could access other things on your computer, maybe you IP address?? - are there any IT people that could tell me what this does? I'm not sure what I am agreeing to.......arrgh!

 

[Sasha]

Are others getting a message when getting into the Chase FB page saying that you have to change your setting from a secure site (https) to an unsecure site (http) to get in?

I did not get this message the first Round, and it's frustrating. I don't understand if it is just to allow Chase to access your FB account - if feels more like they could access other things on your computer, maybe you IP address?? - are there any IT people that could tell me what this does? I'm not sure what I am agreeing to.......arrgh!

I didn't get that message - sorry I don't know anything about this stuff to be able to help you further!

 

[helen41]

Are others getting a message when getting into the Chase FB page saying that you have to change your setting from a secure site (https) to an unsecure site (http) to get in?

I did not get this message the first Round, and it's frustrating. I don't understand if it is just to allow Chase to access your FB account - if feels more like they could access other things on your computer, maybe you IP address?? - are there any IT people that could tell me what this does? I'm not sure what I am agreeing to.......arrgh!

I think this is an IE9 feature that just stated showing up as a warning. Any app requires you to allow it to access your browser with the information they list (basic information, whether they can send you emails, etc all the way up to seeing all your friends). I can't look, because I already allowed it, but I believe they only ask for your basic info. Just allow, then reset. You can delete the app after the contest

 

[SpecialK82]

thanks helen!

 

[Sushi]

I think this is an IE9 feature that just stated showing up as a warning. Just allow, then reset. You can delete the app after the contest

I have my Facebook account set for https and when I went to vote I got this message. After voting and going back to my homepage there was a reminder to "click here" to return to a secure setting.

P.S. How do you delete the app after the setting? Or do you need to if you return your Facebook account to "secure?"

Sushi

 

[anncavan]

Thought I'd share my voting tactics. I've had quite a lot of success with friends voting by sending them personal messages via FB. I wrote an update and why WPI is important to me with the voting details.

I opened FB in 2 screens on my computer side by side. One screen showing my list of friends so I could seen their names alphabetically to type them into the messages (I think you're allowed 25 ppl per message), the other screen was the messages page where I'd copy and paste the same update. I cranked out over 600 personal messages in about 30 minutes and I've had at least 60 votes that I've seen. Not to mention countless personal notes from friends cheering me on.

I wasn't sure if it would work or they'd just consider it spam. Well, it's worked!

 

[anncavan]

And here's my letter if you need a template:

Hi!!

Im writing because I need your help. Im not asking for money, just two simple clicks of your mouse on Facebook. (If you don't want an updated of how I'm doing, just skip below to the links, I won't be offended! Just please vote!)

As you know, I have been sick now for 3.5 years. Unable to work, and depending on the day able to be out of bed from just 15 minutes to 4 hours a day. I have Myalgic Encephalomyelitis (ME) - a chronic, inflammatory, neurological disease that is multisystemic, affecting the central nervous, immune, cardiovascular, endocrinological and musculoskeletal systems. My body is unable to fight off viruses and infections like mono, roseola, lyme and pneumonia. For quite some time I have had all four of these infections, setting up shop in all of my internal organs.

17 million people worldwide suffer, with virtually no viable treatment options and no serious research institutions are doing anything about it.

Until the Whittemore Peterson Institute recently came along. One family, fighting for their daughter's life, footed the bill and opened a state of the art institute for the sole purpose of researching Neuroimmune disease. But, this single family can no longer cover all of these costs alone. WPI needs help raising money to perform the necessary research for a cure.

Thats where you come in. Just a simple "Facebook vote" by you could put the WPI in a position to receive $500,000 in the Chase Giving Campaign. Last I heard were in 5th place. It's easy. All you do is:

Go to: http://apps.facebook.com/chasecommunitygiving and click like

Once you "like" Chase Community Giving, you can vote for WPI by voting at: http://bit.ly/mrWckA

Voting ends May 25th.

As for me, I'm getting by. I miss working, running, travelling and general galavanting. But I'm one of the lucky ones who have ridiculously supportive family and friends.

Thanks for all of your continued support!!! This probably isn't the last time you'll hear from me asking for advocacy help. And please feel free to share my story and ask your friends to vote!!!

Ann

 

[Dolphin]

Thought I'd share my voting tactics. I've had quite a lot of success with friends voting by sending them personal messages via FB. I wrote an update and why WPI is important to me with the voting details.

I opened FB in 2 screens on my computer side by side. One screen showing my list of friends so I could seen their names alphabetically to type them into the messages (I think you're allowed 25 ppl per message), the other screen was the messages page where I'd copy and paste the same update. I cranked out over 600 personal messages in about 30 minutes and I've had at least 60 votes that I've seen. Not to mention countless personal notes from friends cheering me on.

I wasn't sure if it would work or they'd just consider it spam. Well, it's worked!

Well done and thanks, Ann :Sign Good Job:

 

[Dolphin]

Ok, have spent a lot of time on Facebook over last few days. The FB English-language ME/CFS (and CFS/FMS) groups tend to have a few messages each so hard for people to miss. However, I'm not sure how many of the owners have been proactive and actually sent out a message to their members - that would be good.

 

[Dolphin]

:Sign Good Job: Just to say good job to everyone: with less than 3 days gone, more votes have been got for the WPI and CAA than the whole of the 2 weeks last time.

On the down side, a lot of other groups have also "upped their game".

I was slightly worried today as the WPI for example didn't get as many votes as the first two days - but it seems this is a trend across the other groups also. With this sort of numbers, it will be hard for lower ones to "fly up the leaderboard" with a late spurt I think as the numbers involved are so big. A lot are probably out of the 6-figure amounts already and quite a few down the bottom would probably need to start making a move or the chances are they'd be out of the running for anything.

 

[Dolphin]

A message from Annette Whittemore

From the Whittemore Peterson Institute Facebook page:

A message from Annette Whittemore

"As the competition moves along more charities are combining efforts. In the spirit of working together for patients, we're asking for people to use any unused votes to help support the CAA. Many have already voted for both and we thank you. Let's make medical research and patients a priority on this top 10 list for Chase."

---

Links for the two organizations are:

(i) the CFIDS Association of America: http://t.co/VZEd5Pk

(ii) the Whittemore Peterson Institute http://t.co/Ev8j2dP

ETA: I set up a specific thread to discuss it: http://forums.phoenixrising.me/show...temore-encouraging-people-to-vote-for-the-CAA rather than have a discussion spread over lots of threads.

 

[helen41]

I wrote this on the front page, but am repeating it because I want as much feedback as posible. There isn't time to lose
I have an idea. Right now we are about 1500 votes off 5th place, and people who are passionate about ME/CFS have voted already, so those will be hard votes to get. There are other charities in this same position.
I picked medical charities, just because I'm horrified at marching bands being called charities LOL. We could approach the International Rett Syndrome Foundation. They are in 12th, and need 600 votes right now to get to 10th, where they would get an extra $60,000. I'm sure they are as motivated as we are to get votes. The National Marfan Assoc is in the same position. They are in 17th, and 400 below the 10th place, where they would get another $20,000.
I have votes left, and suspect many do. I would like to approach them, to benefit us all. Does anyone object, and will people agree to vote?