by Ian Hyde-Lay
Simon Ibell (SMUS ’96) continues to defy the odds. Now 33 years old, and born with a rare genetic disorder known as Mucopolysaccharidosis (MPS) II Hunter Syndrome, he has been told on eight different occasions he had less than a year to live.
Yet, while he fights a daily battle just to survive, far from feeling sorry for his lot, he, through his amazing iBellieve Foundation (www.ibellieve.com), continues to make a significant difference in the world.
For while his specific condition is rare, his story is not. Indeed MPS II is one of approximately 7,000 rare diseases that collectively affect 1 in 12 people – more than Cancer, HIV and Heart Disease combined. Yet despite these collective numbers, the rare disease community gets little financial support or public awareness, and is often all but ignored by provincial, state and federal governments around the world.
Indeed, on the home front, Canada is the only developed country with NO healthcare policy or funding for patients to access current rare disease treatments or rare disease research.
As a result, in 2010, Simon launched the iBellieve Foundation with the following three goals in mind:
1) To fund the search for a cure for MPS II Hunter Syndrome
2) To fund the construction of a world‐class health facility for MPS and related disorders, and
3) To create a global campaign called “Be Fair to Rare”– a movement to raise funds, awareness, and encourage policy changes for the rare disease
community as a whole.
Already, the Foundation is making an impact. In Chapel Hill, North Carolina, land for an MPS Health centre has been donated for what will be a state of the art medical building. At the University of North Carolina, students, in a move spearheaded by the Tar Heels’ varsity athletes, have participated in a service day in support of the iBellieve Foundation.
In regards to the “Be Fair to Rare” campaign, Monday, February 28 has been designated as International Rare Disease Day. Simon has already enlisted the support of famous Canadians such as Steve Nash (SMUS ’92), Hayley Wickenheiser, George Stroumboulopoulos, Lisa Ray, Craig and Marc Kielburger, Mike Weir, Clara Hughes, in addition to numerous NHL players. This celebrity list will continue to grow in the next few weeks.
Furthermore, all Canadian Members of Parliament will be wearing a “Be Fair to Rare” scarf, designed by Roots, in the House of Commons on February 28. These scarves will be available to the public for purchase online at www.roots.com.
SMUS can spread the “Be Fair to Rare” message to current students and alumni by asking them to visit www.BeFair2Rare.com. Anyone can then sign the National rare disease policy petition and make a donation online or via Mobile Giving.
Simon Ibell is an incredible person, whose vision, courage and determination merit support. Please consider taking time to visit the websites noted above and to get involved.