Tuesday, March 8, 2011

What Ever Happened to the National Fibromyalgia Association?

It seems that there is something amiss with the National Fibromyalgia Association (NFA.)

For starters, a friend tipped me off a few months ago that their telephone had been disconnected. So I tried calling them and sure enough, I couldn't get through either.

Then I heard some disturbing rumors last week that alluded to financial problems, misappropriation of funds and a competition between "rival" fibromyalgia organizations. I'm not going to repeat word-for-word what I heard simply because I can't confirm any of the information.

Also last week, my friend mentioned a new problem to me: she couldn't log into the members area of the NFA website. Sure enough, I tried logging in and the page doesn't appear to be working properly. In addition, the site search isn't functioning either.

I searched extensively all over the Internet looking for an official statement or news report about the status of the organization and I could not find anything. I did find some vague statements about "terrible things" happening at the NFA when I went searching their Facebook page. Someone with administrative privileges recently posted a link to a National Fibromyalgia and Chronic Pain Association publication on which the NFA logo appears. Their message included the statement, "Thank you again for your patience and support!"

I also found NFA President Lynne Matallana referred to only as the "founder" on a post from February 2nd and a quick peek at her personal Facebook page indicates that she "Worked at National Fibromyalgia Association (Founder, President & Editor in Chief.)"

In what appears to be the last official e-mail alert I received from the NFA on December 30, 2010, then president Lynn said:

"At this time of year nonprofit organizations are looking toward the future and developing programs to meet the needs of their constituents. Sadly, the NFA’s future is bleak and without your help we may not be able to continue to provide important services for the fibromyalgia community. This is the reason that I am personally asking each of you to donate whatever you can to the NFA and to date your check on or before December 31 in order to benefit from the 2010 charitable tax benefit.
We pledge to use all of your donated funds in ways that will be the most beneficial to people living with fibromyalgia."
Given all the things I have heard, read and seen, my question is this: what happened to the National Fibromyalgia Association and why isn't anyone talking about it?

This organization is a 501(c)3 non-profit charitable organization. As such, this organization, whatever its current status, has obligations to their donors, funders and the persons they serve. It is my opinion that someone there, from either the staff or the board of directors, needs to step up and start explaining what is going on.

It is also my opinion that it is just not O.K. to close up shop without saying something to all the persons with fibromyalgia who depend on their services to be there for them when no one else is. It's not O.K. to be pleading for donations in December 2010 and unavailable for comment in March 2011. I believe it really sends the wrong message to everyone and anyone that gave this organization a grant, donation or paid for a subscription to FMAware magazine to just disconnect the phones, let the website fall apart and have the staff and board members mysteriously disappear.

I think that not only has the NFA let everyone down, they have created a big credibility problem for themselves should they decide to get their act together, reorganize and start over again. I mean, who is going to trust them again after they started acting like some kind of a flight-by-night operation?

That's my two cents. Now I want to hear yours.

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Kathy said...

Yeah something's up...you (as in a non profit) don't just "disappear"..maybe something rotten in Denmark...irresponsible for sure, if nothing else.

Jennifer Jarman said...

Finally something to confirm what I have been thinking about the NFA. I have not been able to log in either, I've emailed them, called them, and have gotten NO response. I have a support group posted on their page and people rely on that page for information from me yet I cannot login to update it. AHHHHH, thank you SO very much for this post!!!! They DO owe us an explanation.

Annie Sisk said...

Selena, this is extremely troubling news. I was just planning to reach out to a contact of mine who helps with NFA PR today, to help spread the word about Alexandra Jarrin and join with me and a few others to raise awareness about how women with chronic pain are impacted in financial crisis these days.

I definitely want to dig deeper into this. And you better believe I will. (Hee. Apropos of nothing, my CAPTCHA text is "rudimeds" - that makes me laugh.)

Anonymous said...

Selena, I thought something was fishy too. It used to be advertised heavily not now.....nothing. As if Fibromyalgia patients need any more skeptics than we have already. This is truly disturbing. When I next see my Rheumatologist, I am going to ask him about this. Thanks for posting this. Laurie

Wendy Burnett said...

I fully agree Selena - they owe us SOME kind of explanation of what's going on. I spent at least an hour last night removing links to articles on their website, because those resources are no longer available. The least they could do is offer to allow those of us who have used those resources as links from our own websites the opportunity to republish the material with appropriate credit.

The loss of those articles is huge, and if they are unable to keep them available on their own site, I'm sure there are many of us who would be willing to provide space on our sites to keep the info out there for new members of the fmily. (I may not have the space available for all of the articles, but I'd be glad to take a portion of them . . .)

Emily said...

How sad. I was unaware of any services that they offered anyway, but you're right, we don't get enough respect as it is! Now we don't have an association? Doesn't make sense when so many interesting, hopeful, new findings are coming out and people are finally starting to take notice that Fibro is serious!

I'd form my own group, but I'm too sick and tired, lol.

Anonymous said...

Selena, I thought what you wrote was spot on and too be honest they seem to be up something or was up to it and it wasn't good. To go begging for Donations especially to those like myself, who are barely getting by is disgraceful and well give me the Ick feeling. Obviously when a business be it non profit or not hides things You have to know they are tp to no good otherwise there is nothing to hide Great article. Reading more .

Kathy said...

Hey, check this out...did you get a comment from this guy who says he knows exactly what happened? Wow.


Mommaspider said...

There is a lot of obligation and quite a few rules you have to adhere to when creating a non-profit organization. Let's give the NFA credit for 14 years' worth of service to Fibromyalgia communities and set aside negative feelings from the economy's burden on their future, instead placing new hopes and support behind the remnants of those in service who are banding together beneath the banner of the National Fibromyalgia and Chronic Pain Assciation. From what I have seen so far, those who are volunteering for the NFACPA have worked very hard to transfer information, services and support from the NFA to their site and social networks, in spite of the transfer being so close to Fibromyalgia Awareness Day, too. Let's also remember quite a lot of the people who volunteer for either of those organizations actually have Fibromyalgia themselves, and if you have fibro, you realize that volunteering for a project that reaches national citizens in service is going to take a lot out of you, healthwise and timewise. I don't know about you, but that's meaningful to me! If you need, let me know if you want to read President of the NFA's email to all of us who were on email alters from the NFA. It properly states the situation.