Founder, Fibromyalgia Network & the American Fibromyalgia Syndrome Association (AFSA)
Kristin started the Fibromyalgia Network in 1988, three years after being diagnosed. While keeping patients informed about everything fibro, she has learned about this disease right along with her readers. She regularly attends medical conferences in order to relay new treatment advice offered by the experts.
Kristin was the first to unite fibromyalgia patients across the country in grassroots lobbying from 1993 to 1998. The strong voice of patients is what placed fibromyalgia on the research funding roster at the National Institutes of Health, which currently allocates $10 million annually.
“Knowledge is a great weapon for living with fibromyalgia, but advances in research are necessary to make everyone’s life much easier.” Kristin continues to direct the American Fibromyalgia Syndrome Association (AFSA), a nonprofit she founded in 1994 for jump-starting research. She regularly works with the researchers to pursue the most patient-focused, cost-conscious projects for AFSA to fund.
Married, Kristin has two grown daughters. She knows what it is like have little ones clamoring for attention when mom hurts. She often wished that someone could put her down for a nap too. In her pre-fibro life, she worked as a chemical engineer in a refinery. Kristin graduated from the University of Arizona with bachelor’s degrees in biochemistry and chemical engineering.
Shipping and Administrative Coordinator
Mayra is the first person you talk to when you call the Fibromyalgia Network. Cheerfully answering the phones, Mayra has been responding to questions and servicing patients since 1995.
Long before the Internet, Mayra remembers when spreading the word about the Fibromyalgia Network involved being listed as a resource in books, popular magazines, and television news programs. While Kristin was lobbying for research funds in Washington, D.C., Mayra was manning the toll-free phone line at the office.
Today, Mayra is in charge of maintaining the Membership database, customer orders, financial processes, and all aspects of shipping and mailing. And after 16 years, she is still the steady voice on the other end of that toll-free phone line.
As a single mother, she is proud of her two grown children. She loves spending time with her 2-year old grandson and taking walks with her mother. In addition, she has a tiny Chihuahua, “Champ” and a large German shepherd, “Max.” As a Tucson native, Mayra loves to prepare Mexican dishes for her family. “When I started, I had never heard of this disease. The research alone has brought it a long way,” she said. “I have come to appreciate my family and the simple life I have.”
With 25 years experience as a journalist, Janis is in her fifth year with the Fibromyalgia Network team. Starting as a newspaper reporter, Janis became interested in writing about research as a communications editor and reporter with the University of Arizona, where she eventually was editor of the institution’s “Report on Research” magazine.
She became interested in fibromyalgia after finding the Fibromyalgia Network online and relating the listed symptoms to the illness that deteriorated her mother’s life in the late 1960s. Today, Janis writes articles, educational and promotional materials, web content, and is pretty much involved in all aspects of writing and editing for the Fibromyalgia Network.
Coming from a large, supportive family of six kids, Janis and her three sisters went on to become All Americans in track at the NCAA and national levels. She has a bachelor’s degree in journalism from the UA. Originally from Cleveland, OH, Janis and her husband Brian have resided in Tucson for nearly 30 years.
Project Management and Design
Joshua is considered the “Go To” man at the Network. Over the past 11 years, he has been in charge of all technical aspects of the office. Joshua’s job has grown tremendously with the development of rapid communications and Internet technology. He oversees all aspects web development, monthly emailings, promotional materials, and the maintenance of multiple databases.
In addition, he is responsible for the production, layout, and design of the Fibromyalgia Network Journal and all other educational materials including special issues and brochures. As an organizational wizard, Joshua plays a key role in managing the office’s finances, bookkeeping, and day-to-day business transactions.
Unlike some typical computer geeks, Joshua also has a unique sense and compassion to understand fibromyalgia patients. Regardless if there is technical problem, billing error, copyediting question, or someone just needs a second opinion or voice of reason, that’s whose name is called and counted on.
A native of Tucson, Joshua enjoys spending time with his mother, extended family, and his many friends. He has two really cute little dogs, Bert and Molly.
Special Projects and Outreach Coordinator
With untiring commitment, Kelsey brings innovative ideas and an abundance of energy to the Fibromyalgia Network staff. As the daughter of Fibromyalgia Network Founder Kristin Thorson, Kelsey started coming to the office over the summer months when she was 5 years old. She got busy stuffing envelopes, preparing mailings, and eventually became involved in all aspects of the organization. That was 20 years ago.
Kelsey has fibro fog and fatigue herself, but she certainly doesn’t let it get in the way. In 2008, she reformatted the organization’s support group system and doctor referral listings. The following year, she started the Network’s Facebook and Twitter pages, which she still maintains daily. Two years later, the page embraced more than 20,000 friends. In the meantime, Kelsey earned an associate’s degree in applied sciences and has a goal to earn her doctorate in physical therapy. She is currently employed as a physical therapy assistant at Innovative Senior Care by Brookdale, in Tucson.
Kelsey said the Facebook page has really helped her understand fibromyalgia. “I didn’t realize it when I started, but Facebook has been my best medicine,” says Kelsey. “It’s something I can do well that makes a difference and helps others, too.”
In her spare time, Kelsey enjoys West Coast swing dancing, card and jewelry making, and spending time with her parents.