Very important!

[Dolphin]

Just sent out:

Bulletin from the cause: The Neuroendocrineimmune (NEI) Center
Go to Cause
Posted By: Marly Silverman
To: Members in The Neuroendocrineimmune (NEI) Center
IT IS CRUCIAL THAT YOU VOTE NOW FOR PANDORA ON CHASE COMMUNITY GIVING - WE ARE THE ONLY ORGANIZATION FROM OUR OVERALL COMMUNITY THAT HAS MADE TO THE TOP 200
July 7, 2010

Dear Members,
Patient Alliance for Neuroendocrineimmune... Disorders Organization for Research & Advocacy, Inc. (this is how you have to search for us if you need.) DBA as P.A.N.D.O.R.A. is holding a very good ranking on Chase Community Giving. We are the only organization from within our overall Neuroendocrineimmune Disorders (NEIDs) Community that has made to the top 200 ranking now at number 114. You can vote at http://apps.facebook.com/chasecommu...sorders-org-for-resech-amp-adv-inc?m=e9b4807e

We have accomplished this amazing task with the support of individuals like Frank OpDeBeeck,who created a tutorial video to get us on the top 200 and many more, including Phil Campos, who produced the video for the contest, Andrea Martel, Sus Cue-Sagman, Michelle Lonchar, Gaston Gingues, Andrea Pring, Pat LaRosa, Cort Johnson, Blair Miller, Martina M Punktchen, Claire Randall, Nancy K Jay, Thomas Hennessey, Keith Baker, and so many more. Our board members on Facebook, and so many more. You know who you are and we are grateful to you all!

We are also grateful to the National Fibromyalgia Association, The CFIDS Association and the Whittemore Peterson Institute for posting on their Facebook pages asking their fans to vote for P.A.N.D.O.R.A. too.

BUT if we do not get a significant spike on the number of daily votes for our organization, we will lose the opportunity to receive a grant in the amount of $20,000.00. While for some of the larger organizations this may be a drop in the bucket, for us it 95% of an entire year's budget. It is priceless!

Look at what we can do with $20,000.00.
1) Pay our phones, web site hosting, newsletters costs for 2010. Get a new computer that can handle new technology specifically for non-profits including a new efficient donor data base.
2) Get a new updated web site that will continue to inform you and share what we do best.
3) Hire a part-time person to help us in the office to respond to an ever growing number of inquiries & assistance for individuals stricken with NEIDS.
4) Continuing to position our organization and our strategical partners, so we can move on with our main project: The establishment of the NEI Center(TM), in New Jersey. It will take time and money to get this off the ground.
4) Travel to DC to represent you at the CFSAC meetings, Pain Medical Conferences and at the IACFS-ME conference in Ottawa next year.
5) Collaborate with other organizations through our micro-grants for medical students, educational conferences and advocacy/lobbying efforts in the U.S. and abroad.
6) Expand the Quality of Life Advocate Program: Patient Advocates helping others and "paying forward".
7) Expand the Advocate Extraordinaire Program for PANDORA and the NEI Center(TM)
8) Cost of educational brochures (art work, printing and mailing)
9) Support of empowerment groups in Florida and beyond.
10) Provide support to parents with children stricken with NEIDs.
10) Strengthen an organization that is patient-driven and physician approved.

Please vote today for Patient Alliance for Neuroendocrineimmune...(DBA) P.A.N.D.O.R.A. http://apps.facebook.com/chasecommu...sorders-org-for-resech-amp-adv-inc?m=e9b4807e

if you haven't voted yet, we will run the risk of losing our current rankings and end up with NOTHING.

Often I hear that no one cares about our community. That the lack of respect, lack of money for research & patient treatment, and lack of awareness for the plight of millions is the norm. Well, here with Chase Community Giving we have the PERFECT OPPORTUNITY to get all of the 3 major concerns we all have in one swoop. As a matter of fact with the number of individuals stricken with CFS-ME and fibromyalgia, our organization could have been on the top 5, competing for the $250,000.00 and $100,000.00 grants.

Make sure you Vote for PANDORA today and for the other organizations that too share a similar mission with us. We cannot afford to miss this wonderful opportunity.

Here is the link again: http://apps.facebook.com/chasecommu...sorders-org-for-resech-amp-adv-inc?m=e9b4807e

Thank you for your support! We can win this grant! All we need is your vote.
http://apps.facebook.com/chasecommu...sorders-org-for-resech-amp-adv-inc?m=e9b4807e

In Good Health and In Beauty,
Marly Silverman, Founder, P.A.N.D.O.R.A. - www.pandoranet.info
Co-founder: The NEI Center(tm) - www.neicenter.com

 

[Dolphin]

916 votes when E-mail came in from ME/CFS Emergency Action List

 

[Dolphin]

damn, the gap should be at least 50 to 75 votes, for the last day. We can expect a final sprint from the causes behind us.

Although of course we could sprint too. PANDORA covers so many conditions it should have a good chance if groups can be mobilised.

But you are probably right. If people like us who are pushing are to be able to relax on the last day, PANDORA need to be that far ahead (although it might need to be more to be able to relax!).
I almost certainly won't be on the internet so I won't be worrying too much if I should be doing more!

 

[Esther12]

I don't have a facebook account... but know someone else's password!! Bwah-ha-ha-hah!

I probably shouldn't also send it to all of their friends though. Thanks for letting me know about this - the fact that the mailing list is rarely used means I tend to do what it says, rather than the ones which send out all the time and just get ignored.

 

[Dolphin]

Since the last update,
PANDORA have dropped 10 places to 114th.

And
Gap is now 133 (26 closer!!!)
PANDORA: 890
200th position: 757

There really needs to be a push now or it will lose I think.

Since the last update,
PANDORA have moved up 5 places to 109th.

And
Gap is now 151 (18 further away :Retro smile: ):
PANDORA: 954 (up 64 - big jump - well done Frank and everyone)
200th position: 803

However, I'm still not confident. A lot of effort was put into the last 12 hours or so for PANDORA.

The base level of 200th went up by 46 and I think there will need to be a lot of work to get PANDORA close to that amount each time. If you look back, PANDORA has only been going up by much smaller amounts than 46 in recent times apart from the latest.

 

[Tuha]

I don't have a facebook account... but know someone else's password!! Bwah-ha-ha-hah!

I probably shouldn't also send it to all of their friends though. Thanks for letting me know about this - the fact that the mailing list is rarely used means I tend to do what it says, rather than the ones which send out all the time and just get ignored.

Hi esther

Its great that you know the password of someone. if I can ask you make also your own facebook account. Maybe you will not use it but there are always CFS actions like this where you need to have facebook. I dont use it neither - just in the case like this. it takes maybe 5 minutes to have it. Like this you could earn for us also 4 votes. If you vote for 5 organisations you get one gift vote which you can send to someone else and he can send you one gift vote back (normally you have 20 votes but you can vote for one organisation only once and once with gift vote). so please if you can do it - do it, there are still some more days and we will need every vote - some strong organisation come every day from behind and we can easily lose the top 200.
if you need some instractions here is a short video:
http://www.forums.aboutmecfs.org/sh...P.A.N.D.O.R.A.-NEW-SHORTER-VIDEO-NEW-CAMPAIGN.

thanks

 

[Frank]

Gap with the 200th place is now 116 (35 closer)

 

[Lynn]

Hi Esther12,

I am going to vote later today or tomorrow (I still have to set up a facebook account as well). If you like, you can give me your gift vote and I will give you mine.

Lynn

 

[Frank]

PANDORA is really struggeling now, I'm collecting 10 votes a day, where are you people?

 

[Esther12]

Sounds good Lynn.

How are you getting 10 votes a day Frank? You mean from other people?

 

[Lynn]

Esther I PMed you.

 

[Dolphin]

PANDORA have dropped 8 places to 126th.

Gap is now 103 (13 closer)
PANDORA: 1015
200th position: 912

It's going to be close. That was a good half-day for PANDORA. The base score (200th) continues to go up a lot.

 

[Lynn]

I just joined Facebook so that I could vote. It was not as difficult as I thought it would be (I skipped all the information about me). Once I was a member, I used the link http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc to vote for PANDORA.

It was also easy to copy and paste the other organizations into the search and then vote. I am going to list them below again because there were a few typos which I corrected. Thank you to Beesknees for originally compiled these. It would be great if Cort could list them on the explanation page because it makes it so easy. It probably took a total of ten minutes out of my day to vote for twenty. I hope everyone does this in the next few days.

Organizations to vote for after you vote for PANDORA
2. New Jersey Chronic Fatigue Syndrome Association- 94 votes
3. American Association for Chronic Fatigue Syndrome -55 votes
4. National CFIDS Foundation- 52 votes
5. National Chronic Fatigue Syndrome and Fibromyalgia Association -27 votes
6. Blackhills Chronic Fatigue CFS and Fibromyalgia FMS Support Group- 24 votes
7. Massachusetts CFIDS Association- 22 votes
8. CFS Knowledge Center Inc. - 20 votes
9. CFIDS Emergency Relief- 20 votes
10. Manasota CFS/ CFIDS Support Group- 15
11. Connecticut Chronic Fatigue and Immune Dysfunction Syndrome- 13 votes
12. Tacoma Gig Harbor CFIDS and Fibromyalgia Support -11 votes
13. CFS/ FMS Support Group of San Antonio -10 votes
14. Chronic Fatigue Syndrome Crisis Center- 8 votes
Greater Tallahassee Fibromyalgia Syndrome and Chronic Fatigue Syndrome- 8 votes
15. CFIDS and Fibromyalgia Self Help Program- 5 votes
16. American Blue Ribbon Awareness for Myalgic Encephalomyelitis -4 votes

17. Central Virginia Chronic Fatigue Syndrome and Fibromyalgia Assn -17 votes

18. Wisconsin Chronic Fatigue Syndrome Association- 15 votes

19. Chronic Fatigue Syndrome and Fibromyalgia org of Georgia- 10 votes

Lynn

 

[Tuha]

i have one gift vote to share. lynn do you want still send yours? we can do it together if you want

 

[Tuha]

the last day we lost compare to the 200 th place 40 votes. Now the gap is 103 votes. The dead line is in 4 days and 5 hours. If it will continue like this we will not manage it. so please everyone who can do it try to get more votes. its possible - I ennoyed my friends and I got at least 20 points. This 20 000 dollars are really important for PANDORA. Its 95 % of their budget for 1 year - they could doubled their activities.

 

[Dolphin]

PANDORA have dropped 8 places to 126th.

Gap is now 103 (13 closer)
PANDORA: 1015
200th position: 912

It's going to be close. That was a good half-day for PANDORA. The base score (200th) continues to go up a lot.

(Probably my last update)
PANDORA have gone up 13 places to 113th. :Retro smile:

Gap is now 174
PANDORA: 1079 (61 further away! :Retro smile: )
200th position: 905 (this is a decrease of 7 (was 912) - it could be an error 198th is 933).

 

[Esther12]

Esther I PMed you.

I've sent you a gift vote Lynn.


OT: Does anyone else think that this is a crazy way for money to be handed out? Any little organisation could potentially get $20,000 for having a rather small number of facebook votes. Surely loads of nutty religious sects or underground cults should be taking advantage of this? If 4chan got hold on to this the top charities would all be utterly bizarre - (maybe we should ask them to fix it for CFS ones?)

 

[Tuha]

esther, i dont like it neither. a lot of good organisations are fighting about money. especially when the rules are not 100 % good and there are so many possibilities how to cheat. but do we have another possibility? with such a small financial support of CFS we have to take every possibility. if you hear that maybe one of the biggest CFS support institution PANDORA has yearly budget around 20 - 25 000 dollars - you would like to cry. the situation is really bad and what can they do with such a small budget? hopefully, they will get this grant and then they can doppelt their activities.

 

[Esther12]

When you see how many charities for pets are at the top of the list, it can't help but make you think that facebook members should not be consulted for things like this.

Thanks to all the people who've been working on this for CFS.

 

[Dolphin]

Thank god there are not lots of "Facebook Appreciation"-type charities or something similar or they'd be up there as well!
I've talked to some people and to them Facebook is the internet. I prefer specialist forums like this myself where more indepth discussions tend to occur.