EDNF has banned me

Well the Ehlers Danlos National Foundation (EDNF) has banned me from asking questions about the way they run things, evidently. My last post was deleted. There was nothing offensive in it or antagonistic.

I know non-profits are hurting right now & they mentioned web site expense. Something with which I have a lot of experience so I gave them some tech/web free advice – open source is cheap and robust and lots of non profits use it.

The post was deleted and I’m banned from further participating.

EDNF is the most institutionally defensive organization I’ve ever encountered – and I’ve mostly worked for .orgs – any time anyone asks any questions about how things operate, they get their head cut off.

What, for pete’s sake, is wrong with membership wanting to be informed??

It makes me sad because EDSers need all the help we can get.

I don’t think I’ll be going to the conference now.

I know the National Marfan Foundation has EDS under it’s “other syndromes” umbrella and people there are pleasant and forthright because I’ve hung out on their site too.

If any other EDS organizations wants any free IT advice let me know – I have a Master’s and had 15 years experience before EDS and POTS whomped me.


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  • Wacky Lisa  On June 30, 2010 at 7:18 pm

    I currently have one of the free memberships. Either it isn't working right or the free memberships are extremely limited because I keep hitting an error page asking me to log in again. As a result I've been considering upgrading my membership. With what you've shared I think I'll do more research before I do that.I've done very limited work with nonprofits. I know it's hard. However, I still believe in transparency especially about financial matters. My income is limited, like a lot of people with Ehlers-Danlos Syndrome, so I want to be sure that I'm doing the best I possibly can with it.

  • BadGlue  On June 30, 2010 at 7:33 pm

    LOL it's 7 days past the refund deadline so I don't get my $250 back for the cancel. Good one.Hope everyone has fun there.Wacky Lisa – exactly.

  • Achelois  On June 30, 2010 at 8:41 pm

    I'm so sorry this has happened. I joined and paid not as much as you being an international member and that gave me access to the forum. Posted a query and received no reply.I really really feel for you and wanted to offer my support. The least you should have is a refund.I was a little disappointed as the world renowned Professor G seems to be doing a speech for them and I constantly ask why chiari isn't considered over here in the UK. I must be honest even though I respect him I feel the money has become an infuencing factor.My thoughts are with you – if it isnt too stressful I would persist in asking at least for a partial refund. It seems to me that the information available on eds is 'out there' anyhow and not just something that the organisation has available to them.I don't know really what I paid for as a UK individual apart from accesss to the forum which seems somewhat lacking in vitality if I am being completely honest.I am sure if one is 'in' with the groups available via the organisation which provide social connections it is a supportive environment but there are groups here in the UK that do that for nothing.Perhaps there is more going on behind the scenes than we realise. I don't know. In terms of research etc.But all I hear is you sounding let down and hurt and I am so sorry this has happened.Take careAchelois

  • BadGlue  On June 30, 2010 at 10:10 pm

    Thanks Achelois that is very kind.

  • BadGlue  On June 30, 2010 at 10:11 pm

    You'd think with over $100,000 in communications related expenses, the EDNF would like to hear about open source solutions.I'm frustrated more than anything. EDS folks need a good organization behind them.I know the National Marfan Foundation has done a lot for their members, including research that has helped longevity due to aneurysm medications.In 1998, the most recent data I could find (PDF) generated roughly $264,000, paid it's CEO $83,000 and had $39,693 of other compensation costs. It spent $191, 730 on "production of information on the web, copies to educators and parents via guide. network support and communicaitons"

  • BadGlue  On June 30, 2010 at 10:19 pm

    I meant 2008. EDNF's 2008 Form 990EZ via the California Attorney General's charity documentation database.

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