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 First National Conference for Support Group Leaders a Hit 
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Post First National Conference for Support Group Leaders a Hit
First-Ever National Conference for Support Group Leaders a Big Hit

In March, the National Fibromyalgia Association hosted the first-ever national workshop for fibromyalgia support group leaders and FM advocates. Over two days of training sessions, participants learned—by staging mock television interviews—how to work with the media. They also learned how to develop local advocacy programs by initiating state or nationwide policy initiatives to support efforts on behalf of the 10 million people with fibromyalgia and other chronic pain illnesses.

Speakers included Ryan Knoll and Sheila Hershow of Dezenhall Resources, who offered media training; Maggie Buckley of the Ehlers-Danlos National Foundation, who spoke about legislative advocacy; NFA board member Nancy Derby, RN, who explained how to use the “In the Face of Pain” tool kit each participant received; attorney Steve Krafchick, who spoke about legal advocacy and disability; attorney Scott Davis, who spoke about disability; Dana Rutledge, associate professor of nursing at California State University, Fullerton, who spoke about the NFA’s upcoming FM Epidemiological Survey; and NFA Executive Director Lynne Matallana, who spoke about building a cohesive community.

“It was my honor to participate,” said Linda Horton, who leads a fibromyalgia support group in Houston. “I will be sharing so many of the ideas I learned at the seminar with my group back home!”

“The establishment of the ‘Leaders Against Pain’ seminar marked a milestone in the fibromyalgia community’s efforts to expand awareness of fibromyalgia, and to further patient support and education,” remarked Matallana. “I truly believe that the future will be better for people living with fibromyalgia because of the friendships we built, the information we gained, the energy we created, the ideas we exchanged, and the desire we share to bring hope and change for people with fibromyalgia.”

The highlight of “Leaders Against Pain” was the luncheon, during which “Dateline” producer Sandy Gleysteen and Newsweek writer Anne Underwood were honored at the first annual “Circle of Excellence and Media Awards.”

Gleysteen was honored for producing the January 2000 “Dateline” story, “Living in Pain,” featuring fibromyalgia patient Suzanne Miller, who also attended the event. Underwood was honored for her 2003 Newsweek article, “Fibromyalgia: Not All in Your Head.”

The release of the two stories was the first known time that attention was focused on fibromyalgia by nationally recognized news outlets.

“Those two stories made a tremendous impact on the fibromyalgia community when first released, and their effect continues to this day,” said Lynne Matallana, president and founder of the National Fibromyalgia Association.

Over 200 people attended the benefit, including the 35 fibromyalgia support group leaders and advocates from 16 U.S. states and Mexico who won scholarships to attend the NFA’s “Leaders Against Pain” advocacy and media training seminar, held in conjunction with the awards ceremony.

Attendee Rosie Hamlin, lead singer of Rosie & the Originals—the band that released the 1960 hit “Angel Baby”—enchanted attendees by singing “Angel Baby” as well as a new, yet-to-be recorded song, at the opening reception. Hamlin is featured on the cover of the most recent issue of Fibromyalgia AWARE.

Amanda Mitteer, Miss Vermont USA 2005—whose mother was diagnosed with fibromyalgia in 2000—was among the scholarship winners attending the seminar. Mitteer, who joined the pageant to help raise awareness of fibromyalgia, was also the emcee at the Circle of Excellence luncheon.

Tue Apr 19, 2005 6:41 pm
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