Very important!

bakercape

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I'm frustrated

I've been trying to get everyone I'm friends with on facebook to vote for P.A.N.D.O.R.A.. I have sent invites to over 100 people and helped generate about 15 votes.
I'm really having a hard time understanding why we as a community cannot be winning this contest. There are so many of us with NEI illesses/CFS. There are so many people that are on this web site and facebook fans of the cfids association and so forth. Yet last I checked PANDORA has 174 votes leading all CFS charities.
This is a chance for us to do something that actually only takes the click of a button.
C'mon everyone ask evevryone you can on face book, send them personal invites on the iivite choice to vote for PANDORA. Lets help them and help ourselves.
There are lots of other CFS charities too. WE CAN DO BETTER! WE could even WIN the 250,000! Let's make it happen for each other!
 

Dolphin

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I've been trying to get everyone I'm friends with on facebook to vote for P.A.N.D.O.R.A.. I have sent invites to over 100 people and helped generate about 15 votes.
I'm really having a hard time understanding why we as a community cannot be winning this contest. There are so many of us with NEI illesses/CFS. There are so many people that are on this web site and facebook fans of the cfids association and so forth. Yet last I checked PANDORA has 174 votes leading all CFS charities.
This is a chance for us to do something that actually only takes the click of a button.
C'mon everyone ask evevryone you can on face book, send them personal invites on the iivite choice to vote for PANDORA. Lets help them and help ourselves.
There are lots of other CFS charities too. WE CAN DO BETTER! WE could even WIN the 250,000! Let's make it happen for each other!
Yes, it is disappointing.

But it's all disappointing how few votes the other CFS/CFIDS/Chronic Fatigue Syndrome groups have been getting.
 

Frank

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I hope at least PANDORA stays in the top 200. Having many different organisations is not always an advantage, look at the different autism groups participating.
 

Dolphin

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I hope at least PANDORA stays in the top 200. Having many different organisations is not always an advantage, look at the different autism groups participating.
Well, if PANDORA gets in, it's quite possible that a couple of others could also if the same people voted for them.

It's not like people are married to one ME/CFS charity and can't vote for other ones also.
 

Frank

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it's true but it's difficult to bring that message. People in other countries don't really understand why they should support a CFS support group in a certain American state, most don't even know PANDORA... it's not easy
 

Dolphin

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it's true but it's difficult to bring that message..
Just to say: I think there is something to what you say: it is possibly easier to mobilise people behind one or two groups (in this case PANDORA or WPI and PANDORA). It was just when somebody else was moaning about more people not voting, I thought I'd moan too!
 

shiso

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Another one is:

http://apps.facebook.com/chasecommu...-association-for-chronic-fatigue-syndrome-inc

IACFS/ME=AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME INC



Patients could show their support for researchers and professionals in the area. They'd like to fund research also but have no money or not much, as far as I know.
I think the IACFS/ME is an obvious organization besides PANDORA to vote for also. It's the INTERNATIONAL association for CFS/ME researchers, even though their registered name says "American" (and practical tip: you need to search using "American Association for Chronic Fatigue Syndrome Inc"). They currently only have a handful of votes.

I really hope a lot more people rally behind PANDORA and IACFS/ME at least. It takes a few minutes and is VERY easy to do. Think how many individual donations from financially strained patients it takes to gather $250,000 in donations for ANY ME/CFS non-profit organization - compared to a few FREE computer clicks on FB by enough people in numbers to get that for PANDORA.

Let's make a difference!
 

citybug

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Well it was a confusing start, and it's split between a few threads. I wanted to see the WPI results before put all effort into getting other votes.
Does anyone know more about the PANDORA (spelled out Patient Alliance ... on Chase Giving). Will the NEI Center treat patients, or run research studies?

I have a gift vote. Please pm me your facebook name if you want to use it for Pandora.
 

Tuha

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I am also really disapointed. But I am not surprised. When I see the results of petition for PANDORA - after some months signed this petition only around 1200 people. we are talking all the time about at least 1 million CFS americans and then other milions in all over the world. where are all these people? we did a mistake somewhere.
But if I count good this thread red 600 people, emergencion action list has 250 people - so its around 850 people who know about this action, then they made same commercial on facebook sites. PANDORA got 180 votes (other CFS organisations not more than 30). If i count that everyone brought in average 3 votes - maybe 60 people voted - its nothing. why do the people dont vote? is there a bad commercial, is it not good explain, PANDORA is not a good organisation for them,....
People, write here, where is a problem (this is maybe for another thread - the thread for the people to exprime why dont they join the CFS actions), why dont you vote and maybe we can improve the things. with our passivity we cannot improve our case - do you want to stay all your life in beds? - we can cry, we can be angry that the state doesnt do for us a lot but on the end it doesnt change anything and its on us.
Now maybe an idea. I also invited some friends to vote for PANDORA but not so many have done it. when I ask why - its always the same - no time, they forgot,...tomorow we want to meet in a pub next to my house - so I told them we can meet for a short time in my house and everyone who wants to vote, he can do it directly from my computer - everyone said thats a good idea. uf, sometimes its sooo difficult to get some votes - but we dont have to give up. yeasterday I also contacted a french forum, i was talking with an administrator about some activities - I will invite them to join PANDORA and also another activities. I will try to contact also other forums. we have to have a lot of numbers. now, in emergency action list is only 250 people- imagine, if there would be thousands of people it would be much easier now to make commercial for PANDORA voting - we have to make a better commercial to get more people there.
 

frenchtulip

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Contacting other groups to vote for PANDORA

I noted that the National Fibromyalgia Association has over 40,000 fans on Facebook. I am going to put a blurb there inviting them to vote for PANDORA. Also, I will look for other Fibromyalgia groups--like the ProHealth message board--and let them know how PANDORA and the NEI can help them.
 

*GG*

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Just to say: I think there is something to what you say: it is possibly easier to mobilise people behind one or two groups (in this case PANDORA or WPI and PANDORA). It was just when somebody else was moaning about more people not voting, I thought I'd moan too!
Yes, but I believe that we can only vote for our favored 1s once, until the 20th vote?

GG
 

Tuha

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frenchtulip, great idea. if you like, make also commercial for these organisation - they have around 30 votes - its not too much but with better commercial it can work:
NATIONAL CFIDS FOUNDATION, INC.
AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME INC
NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC 11
 

bakercape

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great idea

french tulip. Go for it! I'm thinking about going to some local support group meetings for Fibro and Lyme and asking them to vote for PANDORA.
I wonder if they could get more votes if you could just type PANDORA in to the search section for them to come up instead of Patient ALLiance? It seems odd to me that you can't just type in Pandora and have the org come up.
Also I wonder if everyone realizs you get 20 votes. I mean if your going to vote for one CFS org why not vote for 20 of them?
Hopefully we can keep gaining momentum and have it snowball!:)
 

Dolphin

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Yes, but I believe that we can only vote for our favored 1s once, until the 20th vote?

GG
Not sure what you are saying, GG?

One only gets to vote for each non-profit once. But one gets 20 votes. Lots of people are (presumably) not using most of their votes.

Also I wonder if everyone realizs you get 20 votes. I mean if your going to vote for one CFS org why not vote for 20 of them?
Maybe you're right that a lot of people don't know?
 

shiso

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PANDORA still only has around 200 votes. It's promising it's still in the top 200, but that could easily change in either direction (like getting to the top 5) with so much time left for voting.

We can do better!!!
 

Frank

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You can only vote 2 times for one charity (one normal vote and one gift vote: gotten from someone else)

We're gaining ground in the leaderboard