Today I added a new Face of ALS to the site. I hate doing that, hate that there are new faces of ALS, all day every day. But I am also incredibly grateful when people want to share their personal stories. It’s the most important thing we can do to continue the focus on this disease and how it is affecting lives.

There are no good stories of people getting ALS, but Vivian Connell’s seems notable in its irony. She went back to school in her 40s so that she could launch a second career and continue her good work in the world. (I don’t have an advanced degree, but word on the street is that this kind of endeavor can be pricey.) Vivian was diagnosed with ALS less than a year after graduation. Yet, as you’ll read, she has not let it define or deter her. She is an excellent example for her two teenagers and for the rest of us.

You can read Vivian’s story here, and I encourage you to leave her and the other Faces of ALS your words of support, if you feel so inclined. Each page has a recently added section for comments.

I often hear from people who have ALS, and I invite them to post their stories on this site. It’s a tough ask, at times. I think most people genuinely want to contribute and participate to raise awareness of ALS, but it can be challenging to try to write your story—even just a piece of it—in a way that feels meaningful and right. I want to thank everyone who has shared their experiences this year, whether it was here or elsewhere. This is how we get attention. This is how we make ALS history. One day this disease will be nothing but a memory, a part of the past we won’t quite believe was possible. When that happens, maybe Vivian will be visiting her kids at college. Maybe Scarlett and I will be taking a long walk.

I also want to thank all of the viewers and commenters (here and on Facebook) who take the time to read my own stories. You make me feel that it’s worth writing this blog. I really wish it was a series of posts about knitting or how to photograph farm animals (neither of which I would be qualified to write.) But it’s a blog about living with a gnarly disease and STILL YOU READ IT. Thank you.

I’ll keep it (sort of) short today. Go read about the remarkable Vivian Connell.

If you are interested in being a Face of ALS, please email me at speed4sarah[AT]gmail[DOT]com. I want to help tell your story.

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