One of the joys of this work is connecting with spirited individuals–people who are actively working on a cause that helps others and loving every minute of it. Next month, I'm giving a talk at the Juvenile Arthritis (JA) 2009 National Conference. The title of my talk is "Finding Your Voice." My goal is to inspire audience members to see themselves as "experts" in their own life, whether they are afflicted with JA or the parent of a child with JA. Finding your voice starts with recognizing that you have something to give to others and that usually comes from reflecting on your life and what you've learned from it.

In researching who already is doing this in the JA world, I came across a wonderful online community, called Creaky Joints. The site was started by Seth Ginsberg, when he was still an adolescent. Seth is now 27 years old and the online community has grown to 32,000 members. He works on Creaky Joints full-time and in his words, "Creaky Joints has become much bigger than me."  He talked about how Creaky Joints had become a model for other groups oriented around living with a disease. Seth also is passionate about influencing policy makers on bigger issues that impact the JA community and beyond–like health care reform. With Creaky Joints representing 32,000 voices, Seth clearly understands working both bottom-up and top-down.

I'm struck by how Seth has taken his experience of someone living with JA and turned that into the fuel for a vibrant community. His blog serves as one person's diary of what it's like to live with the disease and navigate daily life, in a way that most of us take for granted, but which resonates with his audience. 

I connected with Seth recently and found out that he's attending the JA conference, for the first time in many years. I've invited him to be interviewed, as part of my presentation at the JA conference. I'm excited that by telling his story, on stage, he'll inspire others to find their voice, and/or to join his community.

Seth has also agreed to be interviewed for this blog. Stay tuned!

PS. For those of you in Houston, I'm trying to arrange a meetup/tweetup while I'm there. If you are interested in being included, please email me, carol [at] abiggervoice.com.