The Concept

Raise national awareness for fibromyalgia, a little understood disease thought to afflict some 8 to 10 million Americans.

Lynne Matallana became ill in 1993. She had chronic pain, disturbed sleep, and was so fatigued she eventually became bedridden. Over the next two years, she went to 37 doctors before being diagnosed with fibromyalgia. It generally takes five years before the typical patient receives an accurate diagnosis. In response, she and partner Karen Lee Richards launched the campaign, a primary goal of which is to educate the medical community so that more doctors are aware of the disease and can make a proper – and timely – diagnosis.

The Challenge

Establish credibility with and gain respect from both the medical community and patients.

At the time the project was being launched, Lynne recalls a community of doctors and patients at odds with each other regarding the diagnosis, treatment and causes of fibromyalgia. Doctors needed to know that the campaign was not just a fringe patient group, and patients needed to know that doctors would advocate for their needs as well. “We wanted, and needed, to be taken seriously by all involved,” Lynne said.

How Community Partners Has Helped

The newly renamed National Fibromyalgia Association (NFA) separated from Community Partners to operate as its own, independent nonprofit corporation – the ultimate goal for many projects that start out here. The administrative and financial services provided by Community Partners allowed Lynne to focus on moving her project forward while learning the ins and outs of running a nonprofit organization.

The group, which was at Community Partners from 1997 to 2001, has since made major strides in calling national attention to fibromyalgia. Lobbying efforts at the state level have resulted in an initiative now in the Senate and a new magazine will soon be launched. “Community Partners helped us become more professional,” says Lynne. “They helped us with our funding strategy, with building our board and staff, and in this way we began to build a solid reputation.”

She credits NFA’s association with Community Partners for the success of two major efforts taken on in the group’s nascent phase. Operating under Community Partners’ charitable tax status, NFA held a major fundraising event when they were just starting out. Shortly thereafter, they were able to mount a major conference in Los Angeles that Lynne says would not have taken place at that stage of their development without the support of Community Partners. “That first conference set us apart,” she says. “It really gave us our start.”

SOURCE: Community Partners 2001-2002 Biennial Report

PROJECT STATUS: The National Fibromyalgia Campaign was a project of Community Partners from 1997 to 2001. Now known as the National Fibromyalgia Association, the organization continues to operate as a successful independent nonprofit.

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