Here are some things about me and why I am walking:

I met my wife, Ellyn, when we were both at the University of Colorado in Boulder.  She was diagnosed with retinitis pigmentosa soon after we started dating, and it has been quite a journey since then.  For years, we followed RP research, but struggled with a constellation of symptoms that seemed to have nothing to do with RP.  Finally, in 2014, genetic testing revealed that she had BBS2.  We were put in touch with Dr. Bob Haws at Marshfield Clinic, and suddenly things that hadn’t made sense before started to become clearer; we learned what we should be monitoring, and even emerging treatment options started to become available.  Her enrollment in the setmelanotide study has made a real difference.  The research going on in Marshfield deserves every bit of support we can give it.

 Ellyn is a psychotherapist who still runs her own private practice.  I was an English professor until I retired at the end of June.  Living with BBS has been challenging.  The research and programs at Marshfield have helped us to meet some of these challenges, and will continue to improve lives in the whole BBS community.