Jennifer Wagner

Marketing & Communications

My husband and I have 4 children; Tyler, Scarlet, Fritz and Clementine. We live in Minnesota in the United States of America. Our daughter Scarlet was born with Schinzel-Giedion Syndrome in September of 2009. She lived until 7 ½ years of age in our home with skilled in-home nursing care. Our life came with many challenges, as my son Fritz additionally was born with Retinoblastoma in 2012. Despite our many ups and downs and the loss of our precious daughter, this syndrome introduced us to the most amazing children and families in the world.

My passion for this work comes from years of caring and advocating for Scarlet and other families like ours. Scarlet was not diagnosed until 3 ½ years of age and her life was full of many painful moments. My hope for this charity is that we can be a vessel to improve these all too common statistics for the sweet children facing this devastating syndrome.

My experience comes from working in non-profit helping low-income families, holding a seat on Children’s Hospitals and Clinics of Minnesota’s Family Advisory Council, being a member of Children’s of Minnesota’s Bereavement Advisory Team, and managing a Facebook page for our daughter for a larger community over the past 7 years.