Do I have it in me to help open a new Huntington Society Chapter? Ideas needed!

Steven Beatty
Inside Huntington’s Disease
2 min readFeb 25, 2016
Photo by Antenna on Unsplash

In my line of work[^one], I often encounter people who are having trouble managing their care at home. I’m not just talking about help with personal care and that kind of thing, but also with household tasks. Unfortunately, funding for home care services is a bit tight right now in my area, so often these folks have to find other help, privately pay for services or move to some kind of supportive housing or long term care.

It’s an unfortunate reality of today. The government knows this and are beginning to work towards a fix, but government fixes take time, of course.

A couple of weeks ago I was thinking about that very topic and, around the same time, I saw the following tweet from the Huntington Society of Canada:

Interested in volunteering? There are options with HSC to volunteer in your own community. https://t.co/yk6qDozEcD

— Huntington Society (@HuntingtonSC) February 11, 2016

So, I thought, “Oh okay, maybe I can see if there are any local HD families that I can help out. Like shovelling some snow or grabbing their groceries, that kind of stuff.”

I shot off an email to the HSC and very quickly received a response back. I was informed that the type of help I was offering to provide is usually completed by a Chapter. Unfortunately, there is no chapter in my area[^two]. That led to the HSC representative suggesting to me that, “hey, why don’t you work towards laying the groundwork for a Chapter!”

I was actually very intrigued by the suggestion and asked for more information about how that would happen.

HSC told me that a good first step would be to plan both: 1) an information session with a speaker, and 2) a fundraising event of some sort. The speaker could be someone from the HSC head office and, ideally, the fundraising event would already be planned in time for the information session so it could be promoted there.

So, I went from shovelling some snow to helping to organize a new Huntington Society of Canada Chapter!

Well, that’s the idea anyway.

I’ve been mulling around the idea a bit over the past week or so, but I haven’t really proceeded with any planning. It’s the fundraiser that I’m stuck on. I had thoughts about a 5km fun run and walk, but that’s just not original is it?

Any thoughts?

Let me know!

[^one]: I’m a Registered Nurse and I work in the home care sector.

[^two]: I live in the boonies. Pretty, but boonies.

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Steven Beatty
Inside Huntington’s Disease

AUTHOR: In-Between Years: Life after a positive Huntington's disease test