community

Serving our community should matter to all individuals. I’ve always believed that if each person were to dedicate time to a charitable cause, our society could bring about profound change. Just imagine the kind of world we could create together. Even though I came of age in a household with…

We all want to belong, but having a rare disease can sometimes feel lonely. Thankfully, the neuromyelitis optica (NMO) community has come a long way since I was diagnosed over 13 years ago. I’ve come a long way, too. Acknowledging that March is NMO Awareness Month is a…

Hello, 2023! A new year brings new opportunities for growth, learning, advocacy, support, and research in the neuromyelitis optica (NMO) community. I am happy to share a few of the exciting things happening in the first few months of the year. Feb. 28 (or Feb. 29 during leap…

In the weeks after my youngest daughter, Bella, was diagnosed with neuromyelitis optica (NMO) in 2017, work and finances weighed heavily on my mind. I’d started a new job a month before Bella got sick, so I didn’t have any paid time off and didn’t qualify for the Family…

At one point in my life, I thought I wanted to be a flight attendant. As a first-generation Canadian, my parents, who immigrated here in 1968, told me stories of foreign countries and the people, the unique food, and the different languages. For most of my childhood, I grew up…

March 25 was a day I won’t soon forget. My 13-year-old daughter, Bella, and I jetted off to Boston to attend The Sumaira Foundation’s 5th Annual NMO Awareness Gala at the Mandarin Oriental Hotel the following day. The trip took a few years of planning and preparation, including surviving…

Neuromyelitis optica (NMO) isn’t all bad. Hear me out. Sure, the needles, pain, and endless worry about permanent paralysis and vision loss are no fun, but there’s a silver lining if you know where to find it. At the start of every year, I think about all of the people…

I am one of the few lucky ones who really enjoy what they do for a living, but that’s probably because I’ve taken control of my destiny. I am constantly reinventing myself and building the career I want. This became even more important after I was diagnosed with neuromyelitis…

Like many Canadians, I grew up watching curling, a beloved national sport that helped make the long prairie winters more tolerable. I’d watch with my grandparents and cheer for the teams that made it to the Olympics. Curling transfixed me with its elegant combination of skill, athleticism, and drama.

When I think about Rare Disease Day 2020, it’s with mixed emotions. The day before, I got up at “o’dark-30” to catch an early flight to Toronto. I’d been invited to attend a Rare Disease Day celebration hosted by a pharmaceutical company that I’m partnered with. I was…