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Posted: May 12, 2010
The Fibromyalgia Network invites you to celebrate Fibromyalgia Awareness Day this May 12, 2010. We want to remind everyone what we are celebrating and how far fibromyalgia awareness has come.
- For 22 years, the Fibromyalgia Network has been keeping patients informed about their condition. In 1988, Fibromyalgia Network Founder and Editor Kristin Thorson voluntarily created and sent out the first quarterly Fibromyalgia Network newsletter to members of five support groups in Southern California.
- In 1991, Fibromyalgia Network started hosting informational booths at major medical conferences to spread the word about the legitimacy of fibromyalgia and chronic fatigue syndrome. While Kristin continued these awareness efforts for seven years, she remembers how doctors would roll their eyes as they passed her booth.
- Patient advocate Tom Hennessy, Jr., President of RESCIND, Inc., started the awareness day concept in 1992 as a yearly reminder to the public and to health officials that people like you really do exist.
- In 1993, Fibromyalgia Network launched a nationwide campaign to lobby both the U.S. House of Representatives and the Senate to encourage the National Institutes of Health (NIH) to fund research on fibromyalgia. Each year, Kristin made three to four trips to Washington, D.C., to meet with legislative aides of Congressional Members who controlled the NIH purse strings. The effort eventually moved Congress to approve preliminary funding for fibromyalgia studies.
- Over the next five years, Fibromyalgia Network worked with patients across the country to lobby Congress. Eventually, the NIH finally began to award several million dollars per year in research grants and created a special committee to review research proposals for fibromyalgia.
- To bolster these efforts, Kristin founded the American Fibromyalgia Syndrome Association (AFSA) in 1994.
- Today, AFSA is the nation's leading all-volunteer nonprofit organization dedicated to funding research to improve the quality of life for millions of patients with fibromyalgia. More than 90 percent of funds donated to AFSA go directly to fibromyalgia research. The organization has limited operating expenses because the Fibromyalgia Network provides it with free office space and other in-kind services. AFSA doesn't just support research, they FUND IT!
- The Network continues to provide our website, the quarterly Fibromyalgia Network Journal and monthly eNews Alerts without advertising, pharmaceutical funds, government sponsorship, or endorsements of any kind.
As always, we continue to disseminate credible research, treatments, and coping information to anyone in the United States and around the world. Please visit other sections of our website for more information on our History, Advocacy, and Awareness efforts.
Your support makes a difference. Thank you.
From All of Us at the Fibromyalgia Network
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