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If you’ve never heard of the genetic disorder neurofibromatosis, you’re not alone. It’s a relatively rare disorder but that doesn’t make it unimportant…
I took part in the Scotiabank half marathon last weekend. Let me stress: I am not a marathoner or even a half-marathoner. I was participating in the 5-km portion of the event which was a fundraiser.
In fact, I’d go so far as to say the fundraising component is the savviest part of the day. Any charity that wants to raise money is welcome to participate. Runners or walkers simply pay a reasonable registration fee (it was around $40 as I recall) and then they are welcome to solicit cash sponsorships which go directly to the charity of their choice (at a rate of 100%).
My daughter, Alison, has a genetic disorder called Neuro-fibro-matosis — or, NF for short. She’s 20 years old now and wanted to do her second fundraising walk this summer. Her goal? To raise $2,000 for the BCNF association. For the second year in a row my husband and I agreed to be one of her sponsors — and said we’d accompany her. (That’s her, pictured above, on walk day.)
I’m happy to report that the BCNF did a few things better this year than they did last:
- Last year’s T-shirts came in two colours (bright blue and mauve). This was a dumb idea because given the vast sea of walkers (there were several thousand of us) we were seriously limited in our ability to make a big visual splash. This year’s t-shirts were black. Very strong. Dominant, even.
- This year’s slogan — Empowering individuals with NF — was a bit banal, but it was way better than last year’s. At least it made people want to find out what NF was. Last year’s slogan was: “Think it’s hard to say? Imagine living with it!” A true sentiment to be sure. But not one that would be very meaningful to most observers who likely don’t even know what neuro-fibro-matosis means! When I talked to a friend of mine about it she said: “Here’s a better slogan: “NF = no fun.”
Sadly, there was still one big shortcoming: Not very many NFers or their families attended the walk. I counted fewer than a dozen. I think the organization should concentrate on increasing the number of participants. I’d have encouraged people (maybe by providing prizes as an incentive) to register more participants rather than just raise more money. Doing the former would not only increase visibility but surely would have increased money as well.
In case you were wondering, the disorder occurs in one out of every 3,000 births. That makes it more common than many better known disorders, such as cystic fibrosis. NF causes (usually benign) tumours to appear on the skin and nerves and a host of other symptoms including scoliosis and learning disabilities.
My daughter is a spunky, upbeat young woman who’s doing really well so please don’t worry about us. I write this not to complain about her lot in life but more to underline how it’s not just businesses that need to think hard about their communications and PR plans. Charities should do exactly the same thing.
