Friday, March 11, 2011

OMA&P! Exclusive: A Statement from the National Fibromyalgia Association

Working on a tip from a chronic friend, I sent an email to Herb Smith, Chairperson of the Board of the National Fibromyalgia Association (NFA) this morning.

I just received this late word from him this evening. He provided this statement for me to post here on Oh My Aches and Pains!

Selena, thank you for contacting me. We saw your blog at our board meeting on tuesday and asked Lynne to draft a statement about NFA, our financial challenges and future plans. Due to a massive drop in income we have had to make many changes with the intent to continue support of our community. We intend to release a more detailed statement soon. But without income we cannot continue the level and breadth of services we once did. Our goal is to focus NFA on research and education. Herb
Sent from my iPhone[sic]

I hope this means that a statement from Lynne Matallana will be coming very soon. I believe that the release of a full, honest and complete disclosure of the NFA's status is only way to avoid their past accomplishments from getting overshadowed by the current way they are running their organization. I promise to republish any official statement made by the NFA here on OMA&P!

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Rosemary Lee said...

Good job Selena! Other than the fact that your comments forced them into making full disclosure. I don't believe they would have without you!!

Heather said...

I have been getting emails from them about the changes they have had to make. This has not been a surprise to me. I received another this morning and it details some of the changes that have been needed to make plus the info that Lynn was in another bad accident and needed to be on bed rest for months. They are combining some stuff with another group so that more can be done. It is to be expected with this economy. They, like so many, lost a lot of thier funding. There is another website to go for info too now.

Sharon Stevens said...

Do you have the link to the other site that's available, Heather?

That was a bit of information about what's going on, however, I do believe that they need to dig deeper in telling all.

Wishing Lynne is doing better after the accident.


Selena said...

@Sharon - the new website is www.fmcpaware.org This is the new partner organization that will be working with the NFA.