Pretend the above image is my team! 🙂 We’re real casual about the whole thing.
Hi everyone. As you probably know, or maybe don’t know. I don’t know. I have dystonia. Dystonia is a rare movement disorder. It interferes with my life in some pretty significant ways, but not ways that are so disabling that I can’t sit here and talk to you. So that’s, that’s a great thing. Yeah.
I just wanna say that I have done fundraising for the Dystonia Medical Research Foundation a couple of times. Many years ago back in, I think it was, oh, ’09 Yes. Oh, ’08 actually. But I started organizing it in ’08 and the event took place in ’09. It took a lot of planning and a lot of work. This was before the internet, before doing things like this on the internet. Anyway, last year I had a team, DMV Dystonia, which I have restarted this year.
And I hope to get people on board.
Here’s some of how it works:
All team donations will be matched doubling your support;
All registration fees of teams of 25 or more (free or paid) will be matched;
For every 10 registrations free or paid) Dystonia Medical Research Foundation gets a hundred dollars from the match.
Okay. And you can sign up it, it helps if even if you sign up for free. It helps because it increases the number of people on the team, but of course, making a donation would be a wonderful thing. And I truly hope to generate as much money as I can for this organization because they do a lot in terms of spreading information out there, increasing awareness of dystonia, which is kind of an overlooked it’s, it’s a rare disease. And it’s really rare in cases like mine.
I mean, I had a stroke and then I developed it and it’s just very weird. <Laugh>, it’s a very weird sort of it, it expresses itself in so many ways. It, it’s very complicated to talk about it because everybody has a different experience with it, I think, but there are certain things that we all share. And so hopefully we can all work together and make this thing, you know, come up with a cure, come up with a better treatment than already exists. That’s the whole point.
Here’s a description of dystonia I found on what appears to be a reliable source. Plus the “official announcement” I made about this earlier.
Right now, there is no cure. There is no really adequate all the way treatment that we know works for sure and consistently. I mean, there are ways to relieve the problem, but not to completely eliminate it. So thank you for listening. And I hope you’ll consider making a donation. I’ll include my team link in this video and whatever blog post I put it up on. Thanks so much. And I’ll talk to you later.
#LetsZOOThis okay? 🙂
Join the team, DMV Dystonia here!
My other “pretend team”. 🙂