Who is in your family?
Brian (Dad), Kristin (Mom), Olivia, Kira
What do you want people to know about your family?
My husband and I have two daughters, and our oldest, Olivia, was born with CHARGE syndrome in 2012. This has shaped our family in many ways, and Olivia continues to amaze us with her strength, determination and personality. CHARGE is a part of our family and has challenged us, but also introduced us to incredible people and community.
Why do you volunteer with the Foundation?
The CHARGE Syndrome Foundation has been a lifeline for our family, especially in the first few years. When you receive a diagnosis, it can be shocking, overwhelming and isolating. Connecting with other families who understand this journey, learning about CHARGE and understanding what resources you have available are so important. I volunteer because I want other families in Arizona to know they are not alone and support is available. I also believe in raising awareness, supporting research and helping build connections between families, professionals and local services.
What activities do you/your family like to do?
We love spending time together traveling, enjoying the outdoors and making memories through everyday adventures. Our family enjoys swimming, exploring new places, movies, Disney, church and spending time with extended family. We also love finding activities that allow both of our daughters to participate in ways that work best for them.
To contact your state’s Family Liaison, or if you are interested in becoming a Family Liaison, please email [email protected].
