John Winstanley

Background

About John Winstanley

About John… ​John is what you would call an "interesting character.” Born in England, raised in West Germany, educated in the United States, a graduate of Purdue University, a retired civil engineer, a former vice president of a construction company, a former atheist and addict, a father, a mentor, an avid runner, an information junkie, an adult colorer, a bonsai tree creator, and Star Wars Fan. Inspired by his children and various life-changing experiences, John became determined to use his life to shine a light of hope and healing into the dark places in society. This passion resulted in John founding the nonprofit FortSafety whose mission is to protect kids and strengthen families, and to join RareStrides and RareWish as the community relations director. As a communicator, John uses his unique blend of English humor, passion, and gift of storytelling to empower and entertain his audiences …and his passion for helping the Rare Community: John entered the Rare Community the day his daughter Laura Gwen Winstanley was born. Life for Laura was a fight against all odds from day one. Laura was born 12 weeks early, at a tiny 1 pound 13 oz. The doctors were not confident that the baby would survive the emergency C-section.but they didn’t know about Laura Gwen yet. Laura announced her arrival by letting out a big cry and squeezing her worried Dad's finger. ​At the age of two, Laura was diagnosed with Mitochondrial Disease. Over the next seven years, Laura gave life all she had. She loved attending school, painting with her classmates, and watching her brother play. However, after seven years of fighting her way through life, her little body ran out of energy. At Laura’s celebration of life ceremony, her teachers, doctors, school bus drivers, therapists, and friends got up on stage one by one to say how much little Laura changed their lives. It was during these testimonies that John realized that when it comes to children and those with rare diseases, there is no tomorrow. They need our help now. They need solutions now. A society cannot be passive when it comes to helping the marginalized and forgotten souls among us. It is time to make #rarevisible