On my other blog I had posted about issues I was having with the Ehlers Danlos National Foundation (EDNF), which is an American advocacy group for those of us who have Ehlers Danlos Syndrome.

On the message boards at EDNF.org members have been asking questions about the way things are run and when they do so, I’ve noticed that the response has generally been defensive.

I had a (not impolite) post deleted, which was mostly advice about how the EDNF might save money in this economy with open source software, but also I expressed that I don’t think there is anything wrong with membership asking questions. The EDNF has given me conflicting info about why it was deleted – technical glitch or terms of service violation but they assure me I’m not banned – the text that mentioned that word may have been an artifact of the software they use for the message board.

In any case, the tone of the message boards lately & message deletion has made me curious so in the interest of openness, freedom and being informed, here is the latest information I could find.

According to Charity Navigator, which rates non-profits, there are some questions to ask when evaluating a charity:

Is it effective?

Charity Navigator suggests that “Your attempt to communicate with the charity can reveal a lot about the organization. It’s a big red flag when an organization refuses to answer your questions or to provide financial data at your request.”

The EDNF does indeed provide 2004-2006 Form 990′s on its site. I think I’ve seen a link to a 2007 form but it isn’t showing up in their site search? They also have a phone and email address where you can ask questions.

It appears that the EDNF submitted the shorter Form 990EZ in 2008:

This PDF file is the 2008 Form 909EZ for the Ehlers Danlos National Foundation (EDNF), which I found in the California Attorney General’s charity database and was the most current Form 990 that I could find online.

The Form 990 can help in evaluating a charity, according to Charity Navigator.

Financial info from the 2008 Form 990EZ:

1. EDNF generated $264,615 in revenue
2. EDNF paid its CEO $83,077 [Los Angeles, California]
3. EDNF had $39,693 of other compensation costs
4. In 2008 EDNF spent $191,730 on “production of information on the web, copies to educators and parents via guide. network support and communications.” [The "primary exempt purpose" of EDNF is to "provide information and support."]

EDNF, with the help of medical experts, produces glossy color informative brochures about various aspects of Ehlers-Danlos syndrome (EDS) – EDS & Dentistry, EDS & Pain Management, etc. The brochures are for sale online.

(EDNF doesn’t provide this information online via download, as they have said that information printed from the internet isn’t taken as seriously by physicians as professionally printed materials are. But very recently, the latest brochure has been made available online as a PDF & a paper copy mailed to members.)

Anyway, that’s the basics. There’s more info in the PDF file and the EDNF also answers questions at staff@ednf.org. This is all the energy I can expend right now but there are more tips at Charity Navigator (link above) about how to evaluate a charity. I’ve tried to provide this info fairly, though I have to admit that censorship makes me angry.

Seems like a shame to delete it.

Since I last blogged, I had to quit working (because of my 2 weird rare diseases). Very traumatic for a Cap rising, Virgo stellium, 6th house moon, & Sun conj MC/South node type of person! I feel like I’m suspended in gaffa. :/

But in the bigger picture, thousands are without homes in my area right now (and jobs) because of the once in a thousand year flood so, if you can, please text REDCROSS to 90999 to donate $10 to the Disaster Relief Fund via your phone bill or there’s an online form on their website. Thanks.

Tomorrow evening (Thurs) there is a local telethon on Channel 4 @ 7pm CST & they will stream it at http://www.wsmv.com.

John Stewart:

http://see.kingstonsprings.org/index.php?gallery=events&collection=flood-2010

I’m not going to be able to go anywhere for a while I think. You have to go over a bridge/creek to get out of area. I’ll ask my neighbor if it is still there.

Minor basement flooding & part of garage.

The wet weather creek in back of the house was like I’ve never seen/heard it. You can hear it here & rain from the kitchen window.

For those of you on Facebook, would you mind voting for Ehlers Danlos Network Cares in the Chase Community Giving? That organization has very low overhead, and has worked hard to make it the current Round 2 (Top 100) of the giveaway. And earned $25,000 thus far.

They are trying to raise money for Ehlers Danlos syndrome (EDS) research via funding a mouse model for EDS type IV (Vascular), which is the type that greatly affects life expectancy.

There are 2 steps to the process:

First, become a fan of Chase Community Giving here

Once “become a fan” you are given 5 votes. This is the charity I am requesting that you vote for. And you have 4 votes left over to vote for 4 others.

Thank you very much.

(Crossposted to my afflictions blog)

More, from Ehlers-Danlos Network Cares:

The Issue

Our HOPE is that this research will succeed so that people will no longer suffer or die from EDS; that an accurate EDS research model will be completed in 2010; that in 2 years, medication treatment trials, much like current Marfan trials, will begin, and by 2014, we will implement a revolutionary new treatment for vascular EDS. We HOPE that new spinoff research will uncover effective treatments for all types of EDS, and open doors for funding other sources of long-term research. We will consequently reach over 200,000 in the medical community who will benefit from new evidenced based publications to effectively recognize and manage EDS patients, optimize successful surgical outcomes, and improve the quality of life for the EDS community. These programs, as well as our pediatric initiatives, will be completed by 2011. In order to accomplish our long term mission and ensure our future, endowments will be established. Our job is to bring these goals to fruition. Lives are depending on it!

My mom has died, so I’m taking a break.