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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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New, Permanent Facebook Group for Online Contests (Fundraising)! - Info in Post #1

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hi all

We have decided to start a permanent Facebook group for online contets, like the Vivint Gives Back Project or the CHASE Community Giving. As we all know, we need more and better research, better advocacy, better education of doctors and the public, and many other things. All of this requires money and since most of us are not especially rich and governments are not being too generous with us, our charities are always lacking funds.

These online contests are a great opportunity for us to get funding for our charities that will help us achieve progress faster. It does not require us to pay out of our own pocket and participating there is not something that's difficult or phyisically hard to do. So it's funding that can be made available for our cause quickly and without losing anything and on top of that it's even fun to participate in these contests and win.
Given the huge size of our community and the fact that we are less distracted by daily life than other groups, since most of us are not working full-time, we are in a better position with regards to these contests than almost anyone else. We can win many or all of them, which means winning over a million Dollars per year. Yes, one million. And in addition to this, it will bring us publicity and can unite us as a community.

Just in these very days, in the Vivint Gives Back Project, our community is on track to win 100'000$ for the WPI and maybe an additional prize of 25'000$ for either the National ME/FM Action Network, the WPI or the IACFS/ME in the wildcard drawing. A couple of days ago the WPI's Annette Whittemore thanked the community for the 65'000$ it won them in this years's CHASE Community Giving. This is something that works for us and there is more to get in these events.

So our thought was that if we have a permanent group, it will allow us to gauge how many voters we have and that we will have a way to reach them. Also it will be possible to send out reminders and it might make it easier for people to participate in the contests if they can do so in the context of a group. With this group, we will be able to inform people about the chance for our community to get funding this way also in between contests and gather interested people in the group, so we will be ready when a contest comes up.

The group is open to anyone, everybody is welcome, the more people join the better. One of our principles is that everybody is free to vote for whatever charity that person likes best, the group accomodates any preference and does not tell you who to vote for. All of our charities can win, we have the necessary numbers, what we need is that people become aware of this chance and help with their participation. Members can make up their own minds about when it's best to support multiple participants (if there are) or unite behind one charity. This personal freedom should be respected.

Discussions will still take place here on Phoenix Rising and wherever you like to hang out, the idea of the group is not to take people away from another place. It's better we keep the talking here on the forums, so it stays in the spotlight.

With that being said, we hope that all of you, whoever reads this message, will join and that we will have a lot of success raising funds for our charities. See you there.

Helen (helen41), Eric (eric_s), Janelle, Alex (Alex3619), Glenna (glenp)



Here is what you need to do to join the group:

- You need a Facebook account. You can get it for free here: http://www.facebook.com/.
All it asks you for, in order to sign up, is name, surname, an email adress, gender and birthday. Don't enter any additional information, if you would like to protect your privacy. Also you don't need to make any contacts, you can use your account exclusively for the participation in these contests. Signing up takes 2 minutes and could not be easier.

- Then follow this link http://www.facebook.com/?ref=home#!/groups/115200951912652/ and join the group.
The group is set up in such a way that you have to be admitted to the group by an admin, but this will mostly happen within minutes. Don't be put off by this, the group is open to anyone and we will be happy to admit you to the group. The only reason we chose this privacy setting is that this way only members are able to read the group's postings. We thought it's smarter if other groups that we are competing against in contests don't know our group even exists or don't know what we are doing.

That's it.



Once you've joined the group, you will find documents on the right hand side of the page that explain the group and list upcoming and current contests/fundraising events and provide instructions about how to vote/participate.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks and well done to you all for setting this up - I steer clear of Facebook (horrible cognitive issues with it, for some reason) except to hit "vote" buttons otherwise I'd be signing up but I'll be following all the contests on here and voting.

You're absolutely right, we could be cleaning up on these online contests with an online community the size of ours and this is a great step in the right direction.

:victory::thumbsup::victory::thumbsup::victory:
 

frenchtulip

Senior Member
Messages
760
Is there any chance we could translate contest announcements into some other languages for those contests allowing international voting?
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Thanks and well done to you all for setting this up - I steer clear of Facebook (horrible cognitive issues with it, for some reason) except to hit "vote" buttons otherwise I'd be signing up but I'll be following all the contests on here and voting.

You're absolutely right, we could be cleaning up on these online contests with an online community the size of ours and this is a great step in the right direction.

:victory::thumbsup::victory::thumbsup::victory:
Thanks, Sasha. If you rather don't join that's fine, of course, but one of the goals we want to achieve with this group is also to get an idea of how many voters we have. So i would like to encourage you (and other people feeling similarly) to sign up nevertheless and then just follow the action here on PR without visiting the group.

You can put the preferences like this that you will not get any email notifications, so that you won't be bothered in any way. If you don't know how to do that, an admin will be happy to tell you how it works. Actually i feel the same, it would get too much for me to spend a lot of time on Facebook in addition to forums and everything else. But because we have a team, it's not necessary to be there all the time. If you choose not to sign up, no problem...
 

Battery Muncher

Senior Member
Messages
620
Thanks for making this eric (and all the other admins). I've put in a request under fake name 'Bobby Flint'. Is that ok (to use a fake name)?
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Hmm... since this is a public place i can't speak totally freely, i hope you understand what i mean ;)

The facts, as far as i know, are that it would be against Facebook rules to use a fake account. But i don't think they actually check, since many people are doing it, and also the worst thing that could happen, i guess, is that they delete your account. Probably chances they find out are lower if the name of the FB account matches the email adress one has used to sign up with. Me, personally, i don't see much problems using one's real name with FB, as long as you don't add any additional information, no photos, etc. But probably not everybody feels the same about that.

Also i think that it would be against most contests' rules to use a fake name. But it's the same situation there, a number of people are doing it and i'm not aware of any disqualification. I think it's more important that it's one person, one vote, they don't care so much about the name.

So, all in all, i think it would be ideal for as many people as possible to use their real names, so we don't run a chance to get subracted many votes or even disqualified, but then on the other hand, what's most important is that we have many voters. So, if some people only feel fine if they sign up with a made up name, i think it's still better we have them participating than if they would be lost for us, if it's not the majority. I think everybody should decide on their own, how they sign up, but what we need most is many votes. Without that, we can't win.
 

Battery Muncher

Senior Member
Messages
620
Hmm... since this is a public place i can't speak totally freely, i hope you understand what i mean ;)

The facts, as far as i know, are that it would be against Facebook rules to use a fake account. But i don't think they actually check, since many people are doing it, and also the worst thing that could happen, i guess, is that they delete your account. Probably chances they find out are lower if the name of the FB account matches the email adress one has used to sign up with. Me, personally, i don't see much problems using one's real name with FB, as long as you don't add any additional information, no photos, etc. But probably not everybody feels the same about that.

Also i think that it would be against most contests' rules to use a fake name. But it's the same situation there, a number of people are doing it and i'm not aware of any disqualification. I think it's more important that it's one person, one vote, they don't care so much about the name.

So, all in all, i think it would be ideal for as many people as possible to use their real names, so we don't run a chance to get subracted many votes or even disqualified, but then on the other hand, what's most important is that we have many voters. So, if some people only feel fine if they sign up with a made up name, i think it's still better we have them participating than if they would be lost for us, if it's not the majority. I think everybody should decide on their own, how they sign up, but what we need most is many votes. Without that, we can't win.

Haha :) Ok, that makes sense, thanks!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi everyone, we need research money and these kinds of competitions are almost free - it just takes a little of our time. Having a single site that posts all competitions worldwide, and which eventually should be multi-lingual, will get us to a cure faster. Bye, Alex
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
For those creating a Facebook account just for this, a quick tip. Although you have to give Facebook a birthdate so they can verify you are not a little kid, you can go to your privacy settings and make this visible "only to me" (so no contacts or advertisers can access this info).
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
This is such a great opportunity for our community, I'm excited that we can communicate money-making opportunities in such an easy way. If we can get a significant amount of people to join around the world, just imagine how we can mobilize! :balloons:
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
we are working on some documents, including a "how to" guide to setting up a Facebook account that will maintain your privacy. There is a lot of excitement within the group. We could accomplish great things!
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
Pandora has an entry in the Pepsi Challenge, and hopefully will be asking for votes in Sept. If you are a Pepsi drinker, or know one, please try to gather as many of the bottle caps from specially marked bottles available across the US. Those caps each have a 'power code' that when entered, can be worth anywhere up to 100 votes.
 

Nielk

Senior Member
Messages
6,970
We must remember that one determined person can make a significant difference, and that a small group of determined people can change the course of history.
Sonia Johnson quotes

We can only achieve goals if we are engaged in it. There is something that each one of you can do no matter how sick you are. That is to become active in the process of raising funds for our causes. It is so simple. You don't need money. All you need is a computer and fingers. There is great strength in numbers. Each person who joins this cause page will empower it. No matter what your view are about this illness, I think that we can all agree that we need more funding.

Please join us on this facebook page: https://www.facebook.com/groups/115200951912652/
You can make a difference!
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
I promised to write a document explaining how to set up a more secure Facebook account, for those who have questions. I found 2 sites that explain it far better than I. The first link takes the reader step by step through the account setup, and the second link discusses other security settings that users should be aware of.
http://damiensymonds.blogspot.com/2...howComment=1313870702138#c4714804207741451860
http://www.pcworld.com/article/220444/facebook_privacy_10_mustknow_security_settings.html
 

Kate_UK

Senior Member
Messages
258
Anyone in the UK will know that John Lewis are a major department store.

Every month we'll be donating 1,000 across three chosen charities and would like your help. Simply let us know which charity you would like to support by clicking on the charity's 'Vote' button. At the end of the month we'll split the donation, relative to the number of votes each charity receives

vote here for Invest in ME
http://www.facebook.com/JohnLewisRetail?sk=app_160436757357028