Hunter Syndrome Patient and Founder of iBellieve Foundation
Simon is the Founder and CEO of the iBellieve Foundation. As one of 30 people in Canada, and approximately 2,000 worldwide born with a condition known as MPS II (mucopolysacharridosis) or Hunter Syndrome, Simon has traveled the world searching for a cure for his own disease, becoming a crusader for the entire rare disease community.
Receiving his degree in Sports Administration at the University of Victoria in June 2002, Simon is also a sought after speaker on human potential and overcoming obstacles. He has been awarded the Spirit of Sport Story of the Year Award at the 2003 Canadian Sport Awards, as well as the Queen’s Golden Jubilee Commemorative Medal for Her Majesty Queen Elizabeth the Second.
A true role model for the role models, Simon has amassed a network of friends and public figures who have supported public service campaigns in support of iBellieve’s mission. Friends such as Two Time NBA MVP Steve Nash, 2000 Olympic Triathlon gold medalist Simon Whitfield, Dallas Mavericks owner Mark Cuban, English Premier star Steve McManaman, and a host of others have all helped Simon spread a simple message: “Be Fair to Rare”.
Simon’s vision is to create widespread awareness of his own rare but serious condition and generate sufficient funds for further research. His goal is to give children with MPS a chance of a prolonged life by providing them with the opportunity for enzyme replacement treatment and to ultimately find a cure for MPS II and all rare diseases.
“I may have a disability but it’s not a handicap.” Terry Fox
Q & A with Simon Ibell
To-date what has been your greatest accomplishment?
Completing the ‘Bike 4 MPS’ journey in summer 2002. By far the most grueling and exhausting thing I have ever done. I completed the journey before I started on Enzyme Replacement Therapy trial in winter of 2003.
Being nominated and then awarded the Spirit of Sport Story of the Year Award at 2003 Canadian Sport Awards for Bike 4 MPS was a true honour.
What is Be Fair 2 Rare?
Be Fair to Rare is a public outreach campaign founded and launched by the iBellieve Foundation with the Canadian Organization for Rare Disorders (CORD), aimed at raising awareness and funds for the rare disease community in Canada. Launched on International Rare Disease Day 2011 (February 28, 2011), the campaign highlighted the fact that despite 1 in 12 Canadians suffer from one of approximately 7,000 different rare diseases.
In the augural year of the campaign, Roots Canada designed a commemorative “Be Fair 2 Rare” scarf that was distributed to every MP in Parliament and worn in the House of Commons on Monday, Feb. 28, 2011. Along with the participation of a number of high profile athletes, celebrities and business leaders such as Steve Nash, Dirk Nowitzki, Adam van Koeverden, Beckie Scott, Hayley Wickenhesier, eTalk’s Tanya Kim, MTV’s The Buried Life, Martin Brodeur, and a host of others.
It is vital we raise awareness of this important issue in Canada with both policymakers and the general population. We further ask that our government continue to explore ways to support this not so rare segment of the Canadian population as it seeks equality in the eyes of our healthcare system.
Do you have one person in your life that has completely changed the direction of your life?
If I could choose only one person it would definitely be my Mom. From my Hunter syndrome diagnosis at 1.5 years, she could easily have taken the doctors’ advice and let me live out my predicted short life span. My Mom knew the doctors’ advice was based on the little information known about my disease at the time; she always encouraged me to set my goals beyond my reach, and encouraged me to partake of everything the world had to offer.
My Mom never took NO for an answer and has always believed in me and my abilities. She has instilled in me so many great qualities, but the number one that thing I always mention is ‘Inclusion’. I was included in everything growing up, from school, arts, sports, and community activities, which gave me the confidence to believe in myself and not let my disease define me.
She is my rock and is always there for me. I don’t know where I would be today if she had taken the doctors’ initial advice all those years ago.
What is the best advice you would like to give to people?
Regardless of the “cards” you’ve been dealt in life, work with what you have and don’t go looking for something you’re not. Embrace your individual rarity and Dare to Be Rare™.
Believe in yourself, accept and take ownership of your capabilities, respect yourself and others and do what you are passionate about in life. We all have the potential, it’s just a matter if we choose to use it or not.
“A true motivator, Simon embodies and epitomizes trust and respect. He has the delicate balance that encourages and allows people to believe in themselves. His understanding of human frailty and spirit attracts people to him. He has an incredible attitude and the capacity to influence the mind and move the body that has resulted in quite ordinary people doing quite extraordinary things. Every moment spent in Simon’s company is a true investment.” Mark Cuban, Entrepreneur and Owner of the NBA Champion Dallas Mavericks.
“Simon is an optimist and refuses to allow negativity to be a part of his life. He is a person I look up to.” Steve Nash, 2 Time NBA MVP
In Print Reader’s Digest article – June 2012 (PDF)
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