Organizations Making History: A Series
As the CFIDS Association marks 20 years of service to the CFS community, it honors the many other organizations making a difference in the lives of people with CFS and related disorders. Here are profiles of four organizations that are leading progress for the CFS and fibromylagia (FM) community on national, state, local and “virtual” levels. Watch the CFIDS Chronicle and CFIDSLink for more profiles of organizations, events and people making CFS history.
A National Force for FM
Lynne Matallana and Karen Richards met online in the mid-1990s, both searching for fibromyalgia information and support. They shared the belief that more could be done to improve quality of life for themselves and others battling FM, and in 1997 they formed the National Fibromyalgia Association (NFA). Based in newly relocated offices in Anaheim, California, it’s now the largest organization for people with FM.
NFA’s magazine, FM Aware, other educational materials, conferences, media outreach and sponsored events serve millions of FM patients, caregivers, support group leaders, physicians and researchers. Lynne has been featured in TIME magazine and is an inspiring speaker at patient conferences. She’s also been instrumental in educating pharmaceutical companies about FM, including officials at Pfizer whose drug Lyrica (pregabalin) was the first medication granted FDA marketing approval for the treatment of FM on June 21, 2007. (See story FDA Approves Drug for FM)
NFA’s work has attracted support from individuals and drug companies, helping the organization to provide a wide array of awareness activities and patient support services that strive to empower patients and instill hope. The organization will host its third Leaders Against Pain conference this August in Washington, D.C., and plans to launch a national FM awareness campaign later this summer.
Advocating in Wisconsin and Beyond!
Pat Fero has led the Wisconsin CFS Association (WICFS) since 1992 when founder Ruby Nakamura died of a stroke. Pat is a constant presence at national conferences and meetings of the federal CFS Advisory Committee—questioning, probing, researching and seeking to understand and be a voice for those with less access and fewer resources than she.
Although WICFS began as a patient support organization and once included 27 groups across the state, in recent years its work has taken on a more global vision. In 2001, Patient Alliance for Neurological Disorders Assistance (PANDA) was formed as a project of WICFS, creating a “home” for people with various overlapping conditions. Through PANDA, WICFS hopes to establish a medical clinic to serve people with poorly defined medical problems. A major fundraising project has sustained hopes the clinic dream will be realized some day. In 2004, WICFS hosted the AACFS’s biennial research and patient conferences in Madison. And following the 2005 death of Pat’s son Casey due to complications of undiagnosed myocarditis arising from CFS, WICFS created the Casey Fero Memorial Fund to support a CFS tissue bank.
This year marks the organization’s 20th year of operation, and they’re now working to establish a national information line to help identify and support undiagnosed CFS patients. Their Lifeline newsletter is a staple for WICFS’s 400 members, about a third of whom live outside Wisconsin.
Community Service Exemplified
For 16 years, CFS and FM patients in the greater Washington, D.C. area have relied on the Northern Virginia CFS/FM Support Group (NoVA) for information, referrals and a sense of community. On the third Saturday of every month, the group meets for general discussion or to hear from an expert clinician, researcher or advocate about the latest information about CFS, FM or orthostatic intolerance (one of the group’s special interests).
In addition to running these monthly meetings that draw 20-35 participants, leaders Elly Brosius and Toni Marshall act as spokespersons for local media interviews, maintain a website, take part in annual Lobby Day events sponsored by the CFIDS Association and volunteer for research studies.
NoVA was the first organization to collaborate with the CFIDS Association on its kNOw MORE CFS Education and Empowerment seminar series, hosting the inaugural event in Reston, Virginia, in June 2005. NoVA also assists the National Fibromyalgia Partnership in distributing FM information. The group has won numerous awards for community service and received enthusiastic praise from many of the 2,000 individuals it has served through its meetings, phone support, a website and regular e-mail announcements.
Online Resource Helps Cut Through Complexity
In September 2005, the first edition of Phoenix Rising was published online by Cort Johnson, whose academic training and interests in history, politics, literature and medicine gave rise to this unique resource from CFS Phoenix. Although CFS Phoenix doesn’t have a physical home, its website is a rich storehouse of information about ideas and events that shape the CFS community. Cort’s writing style is casual in tone, but he takes pains to become familiar with research material and its direct sources before “translating” it into language that a broader audience can absorb. Material is often presented as answers to questions the everyday reader might ask about highly technical studies.
This year Cort attended the January 2007 IACFS/ME research conference and documented his impressions of the presentations and poster sessions. He did the same after participating in the CFIDS Association’s 2007 Lobby Day and the May meeting of the CFS Advisory Committee. A CFS patient himself, Cort doesn’t spare energy on elaborate graphic design or layout for Phoenix Rising. The text-heavy presentation may first appear formidable, but personal observations and insights illuminate dense subjects and reward the reader who prefers substance over style.
Links to organizations in this article:
The summer 2007 CFIDS Chronicle will feature more profiles of organizations making history, as the CFIDS Association of America continues its commemoration of 20 years of service to the CFS community. Future issues of CFIDSLink will extend this article series.