Tag Archives: EDNF

Changes At EDNF

The EDNF has closed their offices in Los Angeles, top leadership has stepped down, and they have hired a nonprofit management company. The new offices will be in Virginia.

Read more here, and there is a PDF press release on that page. I don’t know if you need to be logged in or not.

Excellent news.

I hope the Ehlers Danlos National Foundation gets their shit together, for all our sake’s.

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An Update To Ehlers-Danlos National Foundation Banned Me

I posted an update on my other blog, Ehlers Danlos National Foundation (EDNF) 2008 Financials.

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.

-Jilly