It seems her efforts made a difference. Karen received an e-mail from the Arthritis Foundation of Australia thanking her for generating publicity about the drugs. Some two years later, biologics became available Down Under.

After finding her voice as an advocate, Karen never looked back.

She registered for the Arthritis Foundation’s (AF) Advocacy Summit in Washington, D.C., in March 2003 and met members of the Foundation’s New York office, who invited her to speak at their fundraising walk that year. Since then, she has joined its Board of Governors and speaks at local events and fundraisers. She also consults for the Arthritis Foundation’s Women of Distinction Committee in New York (recently renamed “Women on the Move”), and managed to procure a Picasso lithograph for its fundraising auction last March.

Inspiring Others

She has also quietly opened the eyes of students at the U.N. International School. Seven years ago, one of Karen’s secondgraders, Joseph Lebowitz, noticed her crooked fingers and the flier she’d put on the bulletin board about the local Arthritis Foundation Arthritis Walk. “Joseph put two and two together,” says Karen, who now helps students with special learning needs.

Joseph and his parents joined Karen and her husband on that year’s walk. “I could see her fingers and tell there was something different,” says Joseph, now 15 and in 10th grade. “I began to walk to support her, and as I got more involved, it became more important to me.”

He still walks for AF and encourages others to do so. And thanks to Joseph, “If you came into our school and asked any child what arthritis is, they would be able to tell you,” says Karen.

In addition to her formal advocacy work, Karen runs an educational website about RA (www.karenandarthritis.com) and oversees an informal group she founded for women with RA and/or osteoarthritis to chat about the “practical side of living with arthritis,” she says.

Now on her third biologic, as well as prednisone and a nonsteroidal anti-inflammatory drug, Karen has good days and bad. “When I’m tired, multi-tasking too much or anxious, I will have a flare,” she says. But though her fingers are crooked, her right shoulder is pushed forward, she can’t straighten her left arm, her ankles and knees act up and she walks with a slight limp, she says, “I am doing pretty good.”

And she is optimistic. “New medications are coming out all the time,” she says. “I spent a lot of time angry about my illness, but you reach a point where you have to channel that energy in a positive way. I really would not change the path my life has taken. Accepting and dealing with RA has allowed me to blossom and become the person I was meant to be.”