In 2014, I was diagnosed with BBS2 at the age of 58, which helped to make sense of clusters of symptoms I had been dealing with all my life: vision loss, weight, and increasing arthritis. Up until then, I had been told I had retinitis pigmentosa.

I’m a psychotherapist in private practice, and I live in Madison, Wisconsin, with my husband, Jim. My married daughter, Amy, and her family live nearby. I’m also a voracious reader, and I can continue to read because of audiobooks. On the first Friday of every month a group of adults with BBS get together for booknight. We are adults who have continued to read for pleasure regardless of vision loss. This group is just one of nine groups that are available for adults with BBS because of CRRIBBS and Dr. Bob Haws at Marshfield Clinic.

I’m walking to support the wonderful work and research being done at Marshfield, and also in memory of my brother Barry, who had BBS and died on August 4, 2007 at age 53 from congestive heart failure.