SWF International Conference
 
You can make partial payments towards your conference trip by clicking here


Thursday, July 27 - Saturday, July 29, 2017

Please join our Family in Cincinnati for the 2017 Sturge-Weber Foundation Conference

We are excited that this year's Sturge-Weber Conference is being hosted in our hometown of Cincinnati, otherwise known as the "Queen City", or the "City Built Upon Seven Hills". Of course many cities boast of being the Queen City, but Cincinnati is the original, though perhaps better known as the home of Skyline Chile, Graeter's Ice Cream, King's Island and the Cincinnati Reds! Nestled along the Ohio River, we believe that you will be pleased with what the city has has to offer. But most importantly, we trust that for those of you who will be attending the conference for the very first time as well as for those who are returning, you will find the time spent away from home rejuvenating. Whether you are reuniting with those whom you have already forged lasting bonds, or meeting new friends, families and a new network of support, the conference offers leading edge information, encouragement, and inspiration.

Our first child, Ryan is twenty years old and was born with Sturge-Weber Syndrome. As new parents, we were faced with a medical condition that we found overwhelming and frightening. At the time, our primary resource was the burgeoning internet which was a source of knowledge but not a source of hope. Some of our doctors were unfamiliar with Sturge-Weber and we were experiencing dark days of feeling overwhelmed and isolated. 

It is hard to believe that close to twenty years ago we went to the Sturge-Weber conference for the first time in Las Vegas. I will always remember walking into the conference. Up to that point we had limited information and had never met anyone who had personal experience with Sturge-Weber. Feeling 
somewhat lost, Karen Bell, a beacon of light, greeted is with open arms and heart, and make us feel immediately welcome and "at home" Meeting others who had similar experiences and yet appreciated that each individual with SWS was unique, offered us hope and strength. We met amazing people who have left indelible marks of love in our hearts. We left the conference with a tremendous sense of relief that we were not alone and had resources and support who could help us along our journey. Over the years it has been heartwarming to see the incredible strides that have been made is the SWS medical community and the growth of the support network. Individually and collectively, the SWS family is a shining light. We look forward to meeting you here to share the strength and love of our SWS community.

Ed, Nancy, Ryan, Mollie and Mimi