Many, many people know Nadine, be it on Twitter, Tumblr, or Facebook (and, for a few very lucky people, in real life). Her spunkiness, wit, and love for sci-fi shows (combined with some interesting insights) make of her a caring, fun, and deep person to talk to.
It came as no surprise to find out about her involvment in a project to raise awareness and funds for a little known disease. Hunter Syndrome is, in very short, a genetic disease in which long chains of sugar molecules can’t be broken down correctly because of a missing enzyme; and so, the sugar molecules build up in the body’s tissues, causing complications such as airway obstruction, carpal tunnel syndrome, hearing loss that increases over time, joint stiffness and decreasing mental functions. People who have the early-onset (severe) form of Hunter syndrome usually live for 10 to 20 years, while those with the late-onset (mild) form usually live 20 to 60 years.
Nadine is helping her friend Deb organise a fundraising gala. “Once Upon a Cure, a Gala for Hunter Syndrome Research”, slated for 24 September 2011 at the Sutton Place Hotel in Vancouver, which will give invitees an opportunity to hobnob with a variety of actors and celebrities from Vancouver. The evening will include a cocktail hour, a sit-down plated dinner, a silent and live auction, speeches, a chocoholic dessert buffet (a specialty of the Sutton Place), as well as live music and entertainment throughout the evening.
While Nadine is playing an important part in the organization and marketing of the gala, Deb is its driving force. Her son, Trey, was diagnosed at the age of two with Hunter Syndrome; since then, Deb has been actively engaged in finding a cure.
I recently had the opportunity to talk with Deb and let me tell you, it was something quite special. Just to give you an idea: I have talked to a lot of pretty amazing people in my life, and yet within moments, Deb shot up the list of most inspiring people met to date. Our conversation reminded me another one I recently had concerning heroes.
In short, heroes are typically portrayed in movies as a chosen one to whom is given a special power or object to perform a task that they alone can perform, a task that will save the world. While on the surface, it can seem that stories centered on such heroes can be quite inspiring, the contrary seems truer: these stories are disempowering, as no one individual can hope to change the world alone and inaided