Best CFS and/or Fibromyalgia groups to donate to?

[realjoy]

Thank you!

Great. Just voted and signed up (had to make up a GPA).

For each round, I hope an E-mail that can be circulated will be created by somebody (not me). If that is done, who knows what will happen. I'll "cover" the ME/CFS community in the Rep. of Ireland anyway.

Do you know there are 23 regions? so maybe best not to take anything for granted in terms of getting in the top 64.

So if youre reading this thread, go on and vote now!

Yes, there were 23 regions in this round, and the two top vote recipients in each region will move on to brackets. And I'm happy to report that SHE MADE IT to the top 64!

Thank you Tom, and everyone else who voted Our newspaper may also be running a piece about it, so that will bring even more awareness and maybe donors too! I'll let you all know if they do. The next round is when the head-to-head bracket competitions begin. The first one is this Thursday through Sunday.

 

[Dolphin]

Voting has started

Yes, there were 23 regions in this round, and the two top vote recipients in each region will move on to brackets. And I'm happy to report that SHE MADE IT to the top 64!

Thank you Tom, and everyone else who voted Our newspaper may also be running a piece about it, so that will bring even more awareness and maybe donors too! I'll let you all know if they do. The next round is when the head-to-head bracket competitions begin. The first one is this Thursday through Sunday.

Voting has started - she's losing at the moment.
I hope a message which can be circulated will be written.

 

[realjoy]

Voting has started - she's losing at the moment.
I hope a message which can be circulated will be written.

I don't know how to do that? If someone could tell me I would appreciate it

 

[Dolphin]

I don't know how to do that? If someone could tell me I would appreciate it

Basically it needs to explain to people on random CFS lists etc that they should vote for your daughter and why (i.e. the money could help ME/CFS and FMS charities as well as your daughter). Post it here and hopefully some of us will post it in some places and maybe Frank might post it to his action list. But you're leaving it pretty tight as some people might only log on once a day.

 

[Dolphin]

I also had a really wonderful conversation with the gentleman that runs pocketmoneyfund and he is going to write a blog about her efforts and the scholarship.

Anything happen with this?

 

[leelaplay]

There also the new Neuro Endocrine Immune Center that pandora is trying to establish.

Here's their website. It has more info and a donate button.

Cort wrote an article on it that's on the home page right now:

Marly Silverman and others at PANDORA and the Landford Foundation have big plans. She wants nothing less than to build the first NeuroEndocrineImmune Center for the research, treatment and education into diseases like Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, multiple chemical sensitivity and others in New Jersey. (Think the WPI's Neuro-Immune Institute with the 'Endocrine' added. - think a WPI on the east coast)

NEID is taking a multi-disease approach because it believes that "the discoveries and advances made in anyone of the NEID's, will be applicable at beneficial to the other NEID's, thereby bringing researchers closer to a cure".

Pandora and the Landford Foundation have done their groundwork in New Jersey; they received backing from several New Jersey Assemblyman and the resolution authorizing the center got a unanimous yes vote from the New Jersey Assembly. New Jersey is behind it - now the job is to get funding for the project and that's we come in. PANDORA is trying to get the Dept of Health and Human Service behind the project and desires a meeting with Secretary of Health Sibelius. They're trying to get 100.000 signatures to demonstrate that they have the community behind them.

Let's start a trend - two Neuro-immune- (Endocrine) Centers. Marly is nothing if not a big thinker. She's talked to Annette Whittemore about creating these entities and she thinks she has a model that can work in other states as well, and, if this works to other states she will go.

Let's create another foothold in the medical community - this time on the East Coast.

* Simply go here to sign the Petition. (You have the opportunity to donate as well.)

 

[realjoy]

Hi Tom =)

Yes, he is *wonderful* and was very supportive with the entire cause, particularly because he is a big proponent of education. He posted a blog on the site with a link.

As far as the contest, it is over for her now. She won the first two rounds, and lost in the third with a 9% difference. We are still waiting on a total of votes from the website, and after we get that we can tell you what her total donation (plus ours) came to. There was quite a bit of traffic to her website, so we are hopeful that many people were educated about CFIDS & FM, and hopefully some even donated! We won't really know, unless they noted it in the donation. She is going to leave it up for awhile, just in case more people visit.

A big THANK YOU to everyone here for supporting her. We both sincerely appreciate it! I'm really proud of her and her big heart And I'm really proud to be part of a group of such caring, supportive individuals!

Joy

P.S. If you want to delete your zinch account, just log on and look at the far upper right hand corner....go to "settings" and click...on that page scroll to the bottom and there should be a 'delete account' button.