My name is Marilyn Ogan, and I live in the central Indiana (US) area.  In July of 1992, my husband Rick and I joined the “elite” group of individuals or families of individuals with CHARGE syndrome.  When our daughter Kristin was born and immediately diagnosed with CHARGE syndrome, we were dazed, confused and had no real idea about what would be in store.  None of the specialists knew anything beyond their area of expertise.  While at a rehab hospital, we were given the first booklet about CHARGE syndrome for families, published by the Quota Club of Missouri.  That booklet started us on our way to knowledge and the Foundation.  And now, instead of being “dazed”, we are simply “amazed” with our daughter!

 We attended the Portland, OR conference in 1995, met our other “family members”, and have felt a deep desire to assist in planning additional conferences ever since.  We’ve attended all conferences since then.  I have been the conference chairperson for two conferences (commonly called being the “Lunatic, squared”), and helped with many of the others.  It is an event that takes a lot of time and effort to coordinate; but I have felt the need to help provide the best information available about CHARGE to all who attend, as well as make the conference safe and fun for the kids.  I have been rewarded more than just twice over for those efforts! 

Either Rick or I have served on the Board of Directors since 1997 (Neal Stanger and I have grown up with the Board together!).  I have served as Vice-President from 1999-2001.  My goal is to be able to provide further conference assistance, as well as having recently volunteered to assist with the Public Awareness Committee.  It has been an honor working with truly outstanding individuals over the years, and I see only more good things to come for the Foundation and, ultimately, our member families and individuals over the next many years.  The Foundation provides support, a resource and information center, and an opportunity to connect with others who experience similar challenges, whether medically or educationally, or on into the years of transition to the community.  We still have a lot of work to do, and I’m rolling up my sleeves!