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.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?
We pledge to use all of your donated funds in ways that will be the most beneficial to people living with fibromyalgia."
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.