Our Story
It started because nobody else was doing it
Single Snowflake MG Advocacy Association was built by someone living with myasthenia gravis, for people living with myasthenia gravis — and for the families who are living with it too.
How it began
Nadine Parsons was diagnosed with myasthenia gravis 26 years ago, after years of being told that what was happening to her body was something else, or nothing at all. She spent roughly the first twenty of those years without once meeting another person who had it. When she finally did, she cried.
That is the gap Single Snowflake exists to close. Not a gap in medicine — a gap in company. MG is rare enough that most people who have it have never met anyone else who does, and rare enough that most people who don't have it have never heard of it. Both of those facts leave patients alone in a way that a prescription cannot fix.
So she started an organisation, out of her own pocket, and named it for a single snowflake: the smallest possible thing, and still enough to change a landscape when it doesn't fall alone.
Where it is today
Six things, run by volunteers, most of whom have MG themselves.
MG Warrior Gatherings
Regular gatherings for people with MG and their families, on Zoom and in person, so that nobody has to wait twenty years to meet someone else who has it.
The annual MG Awareness Walk
Held on the last Saturday of June in Halifax. Single Snowflake was the first organisation on the East Coast to hold an MG walk, and the fifth was held in June 2026.
Pamphlets where they matter
MG information distributed to clinics and specialists' offices, so a patient and their doctor can both find out what MG is — and that there is somewhere local to turn.
Presentations and education
Talks for workplaces, schools, community groups and healthcare teams, in person or online.
The Mighty Giant
A stage awareness play created by Nadine, using live performance to teach communities about invisible illness — because some things land harder when you watch them happen.
Speaking for patients
Partnership with the Myasthenia Gravis Foundation of America, plus broadcast media and patient-voice interviews, to keep people who actually live with MG in the conversations that affect them.
Five true things
No fundraising totals and no membership figures — just what has actually happened.
26years
Nadine has lived with myasthenia gravis
20years
before she met another person who had it
1st
MG awareness walk on the East Coast
5
annual walks held in Halifax so far
June
MG Awareness Month, proclaimed in Halifax
Where we're going
Canada deserves what the MGFA is to the United States
In the States, someone diagnosed with myasthenia gravis has a national organisation behind them from day one. In Canada there is no equivalent, and that is the thing we would most like to help change.
We are not pretending we are there. We are an advocacy association run by volunteers in one city. But a municipal proclamation started as one person writing letters, and the first MG walk on the East Coast started as one person deciding to hold one.
Questions we're asked a lot
Are you a research foundation?
No, and we're careful about the difference. Single Snowflake is an advocacy association. We raise awareness, we educate, and we bring people together — we do not fund medical research or pay for anyone's treatment.
We admire the Myasthenia Gravis Foundation of America enormously, and we hope Canada one day has something like it. That is not what we are today, and we would rather tell you that plainly.
I'm not in Halifax. Is this for me?
Yes. We are Halifax, Nova Scotia rooted, and we welcome MG Warriors across Canada — that is exactly how our founder puts it.
Halifax is where the walk happens, where the proclamation came from, and where our pamphlets sit in clinic waiting rooms. But Gatherings run on Zoom precisely because MG makes travel hard, and there is no province on the sign-up form.
Who runs Single Snowflake?
Nadine (Nay) Parsons founded it and leads it as an unpaid volunteer, alongside a board and a small group of volunteers. She has lived with myasthenia gravis for 26 years.
The organisation has been kept going largely out of her own pocket.
How can I help?
Come to the walk, or volunteer at it. Invite us to present to your workplace, school or community group. Share what MG is with someone who has never heard of it.
Donations help too, and there's a page explaining exactly where the money goes — but time and word of mouth are worth just as much to an organisation this size.
There's a person at the other end of this
Not a call centre and not a chatbot — Nadine and a small team of volunteers who live with MG themselves. Ask us anything, or just say hello.