Category Archives: Research

A Night Out

The ALS Association invited me and Rob to a dinner on Friday night. They had a research summit in San Francisco last week, so we were prepared to dine with scientists, doctors, and researchers, many of the great minds hard at work on the problem that is ALS.

Rob and I don’t go out a ton. We tried to do date night for a while, but our idea of a truly relaxing night is sitting on the couch, drinking wine and watching Breaking Bad. I never wear makeup to sit on the couch and watch Breaking Bad.

Putting on makeup is an interesting challenge these days. I can still do it alone, but it’s shaky. I usually end up with mascara in several places that don’t involve my eyelashes, and I keep a pack of baby wipes in my bathroom to correct all of my mistakes. I don’t think the average person would know that upon looking at my face afterwards, and I’m content to keep doing it solo for now. It’s become almost meditative, more artful than it ever was for me. Slowly, slowly painting. Taking breaks for cramping fingers. Putting on the face of someone who wants to project strength, health, and the illusion of sleep-filled nights. Read More>

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Speed4Sarah Fall Fundraiser

My baby brother Paul is six years younger than me. This is currently confusing, because although I still see him as a chubby adorable child, he happens to be 30 years old. This means that he is—and has been for some time—an adult (still adorable.) And that means that he can do things like support himself, be in a serious relationship, and band together with his good friends to set up a fundraiser on Speed4Sarah’s behalf, which he did the Friday night after Thanksgiving.

The idea, I believe, came from the girls. I’ve known the sweet Anna Biggins and her family for years, since back when she was a Schroeder and before she had two kids, little blond babies with the names of fairies. I asked her brother Eric to King of Hearts, our high school’s version of a Sadie Hawkins dance. Our moms are friends who used to teach together, and Anna’s mom has read every novel worth reading. She writes her name inside them before passing them on liberally. I like this fact. I wonder if the books always make it back home. I wonder if I’ve accidentally stolen any of them.

Anna is friends with Elyse Caringella, a pretty pixie who has written me emails that make me laugh, and who felt motivated to organize an entire event to raise money for ALS, despite never having met me. Read More>

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Precision Medicine

Rob and I stayed on west coast time during our visit to Boston, lazily ordering room service on our first couple of days because going outside and fending for ourselves would have required too much energy. This is why I was still in pajamas, and showing a rather inappropriate amount of leg when the server brought breakfast up at 1pm on Saturday. This isn’t like a sexy thing. I was in my wheelchair probably scrolling through my Facebook feed while Rob watched football. And you know what? It was perfect. The server may have found it even more perfect if I’d been wearing pants, but you can’t please everyone.

As I’ve already reported, we were in Boston for the ALS TDI party, but we were also there so that I could participate in TDI’s Precision Medicine program. On Monday morning, we got up “early” aka 9:30am, and headed down the street to Massachusetts General Hospital. The first part of the program involved having blood drawn, followed by a small skin biopsy, during which they removed a part of my arm that was about the size of a pencil eraser. The whole thing took 10 minutes.

Then we were off to ALS TDI’s offices in Cambridge. Read More>

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