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Who is John Winstanley?

Updated: Oct 31, 2023

When I hear that title, I think of an action filled movie...well, our John is not in any action films (that I am aware of) however, he is filled with energy, enthusiasm and compassion to give back to the Rare Disease community.

John Winstanley is our Community Relations Director. 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, a cat dad and a 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 a tech nonprofit, whose mission is to protect kids and strengthen families. As a leader and communicator, John uses his unique blend of English humor, passion, and gift of storytelling to empower and entertain his team and audiences.

So, how did John Winstanley jump into the action at Rare Wish? He also had a daughter with a rare disease. 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, on April 1st, 2012, 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 in helping the marginalized and forgotten souls among us.

John has been in the community sharing the story of Rare Wish and is looking forward to connecting with you to #makerarevisible

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