Simon Ibell has a rare genetic disease, and he also has a rare way of connecting with everyone he meets and inspiring them.
Without hesitation I said my friend Simon Ibell. According to a recent news feature article, Simon is “that rare person who can create an instant connection with whomever he meets. His charisma dazzles”. I couldn’t agree more.
As a toddler Simon was diagnosed with a rare genetic disease, Hunter syndrome or MPS II. People with MPS II face a variety of symptoms, including cardiac problems, hearing loss, obstructive airway disease, limited mobility, developmental delay and enlarged livers and spleens. Doctors predicted he would not live beyond the first two years of his life. Simon is now 32.
His tenacity, optimism and confidence are unsurpassed and infectious.
Among his accomplishments he was named the Canadian Spirit of Sport Story of the Year for having biked 500 kilometres over 10 days on Vancouver Island, raising $250,000 for MPS diseases.
His biggest accomplishment is yet to be realized. He’s raising money to create the world’s first medical centre dedicated to MPS diseases and also wants to help create a Center for Excellence for Rare Diseases. To be affiliated with the University of North Carolina at Chapel Hill, it will be a one-stop shop for MPS diagnosis, treatment and support. “My next goal,” he says, “is to find a cure.”
He has many influential friends behind his vision including professional basketball star Steve Nash, who was four years ahead of Simon in high school. They continue to be very close friends. Nash calls Simon “a remarkable person” and you feel that from the moment you meet him.
Simon has created the “I Believe Foundation” for rare diseases. The name, as Simon puts it, is derived from the last four letters of his last name (Ibell).
Simon is a rare person who inspires you to embrace your challenges and step up and into your life fully and passionately.
Who inspires or has inspired you in your life? How have they done that for you?
Steve Goldberg is the co-author of Finding the Upside: Practical Wisdom for Challenging Times. You can read more about and purchase the book at: www.findingtheupside.org
Toronto Star: “The Making of a Health Care Crusader”
“Simon Ibell” The Star.com
“Mark Kennedy, Steve Nash, Ivan ‘Pudge’ Rodriguez and Simon Ibell” Onward James, Health Care Crusader,