Or rather, Ibellieve – Toronto, September 23.
No, it’s not a typo.
The “Ibell” in Ibellieve refers to Simon Ibell, SMUS grad of 1997. Simon is Chair of the Ibellieve Foundation, the most powerful advocate for research into rare diseases in the world. Simon is also one of our “Alumni Panel” for the Best School Year Ever initiative that brings boarders to SMUS from all over North America.
When I first met Simon he was in Grade 11 at the School. The bus he was riding got into an accident and the immediate worry was that Simon’s unusual and unpredictable constitution – a result of his MPS II, now known as Hunter’s Syndrome, a rare disease caused by enzyme deficiency – would have a hard time dealing with injury. Fortunately he was fine.
By that time, at age 17, Simon had outlived by seven years his predicted lifespan. Every year he would be told he might have another year to live, but by this time – 1996 – Simon was committed to living the ordinary life of an SMUS student. Despite his stunted growth, his hearing aid, and the challenges sometimes of even breathing, he participated in sports, musicals, academics, and ended up graduating, going on to University of Victoria. He was totally focused on his abilities, not his disabilities. The full life he continued to live at university, and afterward, is in fact far from ordinary. More recently, after an experimental treatment proved successful in controlling the disease and reversing some of its symptoms, Simon has been able to take up the cause of rare diseases, as described on his website.
When Simon talks about the School, in his understated, clear and articulate way, he credits his experience at the School for the fruitful unfolding of his life. Of course his own inner personal resources are massive, which is why he is such an outstanding example of human capacity. Next Wednesday in Toronto is a major event to draw attention to the work of his foundation (information here http://ibellieve.com/event/rare-evening-toronto/). Another well-known SMUS alumnus and strong supporter of Simon’s work, Steve Nash – whose other claim to fame is an unparalleled career in the NBA, two-time winner of the NBA’s MVP award – is the keynote speaker at the event. I, Ian Hyde-Lay and a group of other SMUS alums will be in attendance.
Every day I think about how lucky I am to be part of this community so overflowing with human treasure, and Simon is one of the brightest jewels in this trove.